Friday, December 30, 2011

happy new year from blue shield

Just when I thought I had gotten through all of the nightmares with our health insurance, Blue Shield decided to give me a new challenge to contend with. It appears that UCLA and Blue Shield can’t come to an agreement about money. Shock, I know! So come January 1, Paul’s care at UCLA, which is one of the top ten cancer centers in the country, will no longer be covered at what is called an in-network rate. However, there is a thing called Continuity of Care which we can file for since his diagnosis falls into the realm of terminal cancer. I never thought a diagnosis like that would have its benefits but for once it might just work out in our favor.

The first major problem is that they sent us this letter with a whole day's notice before his coverage is useless. Thanks asses! And of course, their offices are closed thanks to the holidays so I'm scrambling to get this sorted. Add to it, that his next appointments with his oncologist and chemo are set for January 6 so I have to basically cause enough stink to get this done as soon as possible with only 3 business days to get it done. This is going to take every trick I can think of to pull it off. Wish me luck! Looks like 2012 will such just as much if not more than 2011.  

Thursday, November 10, 2011

purple hands and feet and chemo brain

Between the hand-foot syndrome and the fact that Paul had a bad case of dehydration when he couldn't eat, the oncologist has reduced his Xeloda from 3,000mg (6 pills a day) down to 2,500 mg (5 pills a day)to see if this helps ease the symptoms. Paul wasn't too happy about the reduction since he wants to do the most to try and kill all of the cancer and sees this as a setback but given all of the weight loss that he has had over the last 2 months, a reduction was in order anyways as the dose is based on your height and weight. It doesn't help that when you are on chemo, you also develop what is known as "chemo brain." Basically, you forget things often and quickly which is not helping matters since Paul has to be applying lotion 4-6 times a day every day to help with his hands and feet. I've lectured him. The oncologist has lectured him. The nurse practioner has lectured him. The chemo nurse has lectured him. Yet, he forgets to do this on a daily basis and, of course, blames chemo brain. As I always tease him, I don't know which is worse - the pre-chemo Hornby brain or the new Hornby chemo brain. Time will tell.

how's the barnett

When people ask me how Paul is doing, my usual response is, "Still alive and still a full head of hair." Hence, the most popular question that Paul has been asked since he was diagnosed with the "big c" is "How's the hair?" There are at least three people, who call, text or email every other week or so, to inquire about how his hair is doing. When you are an old rocker, the fact that you still have a full head of hair after years of dying, crimping, teasing, straightening and hairspray abuse, is paramount enough, thus, when he started on chemo, we were all worried, most of all, about his precious hair. It is bad enough that most of it is gray these days because he can't dye it due to the chemo, but to actually lose it all, that's a whole other kind of nightmare. Yes, we know that there are special dyes made for chemo patients but when you have already endured months of chemo and you still have all of your hair, the idea of taking a chance by dying it, is cause for much deliberation. And, yes, if it should ultimately all fall out once he starts the next lines of treatment, he's declared already that he will deal with it (not like he will have much of a choice anyways) but at least we will all know that it went because of chemo and not because he just went bald, like the rest of the men in his family. In the meantime, he can still proudly proclaim, "Thick on hair, thin on talent."

Tuesday, November 1, 2011

can we just get a break please

As I stated months ago, I am currently a contractor for one of the best companies in the country. Paul and I have been counting down the days until the day I would be converted into a full time employee (keep in mind that I work full time but us, contractors, are considered part-time for whatever reason).So today was the day that I was to finally start the conversion process or so I thought. Turns out that the company I work for was putting a hold on all conversions for the next quarter. To say I was distraught is a major understatement but I pulled up my big girl panties and accepted that my conversion would just have to wait until the holding time expires sometime during the spring of next year and that I would need to resort to the last trick up my sleeve, which is to cash out my paltry 401K to give us a little padding until that glorious day when I become a full fledged employee.  See one of the many great perks at the company I work for is that they cover my insurance 100% and cover 75% of Paul's portion, which means the cost will go down to about $50 a  paycheck pre-tax which is unheard of in this economy. So it's back to creative financing to cover the $900 a month health insurance payment along with all of the other bills and medical expenses. I've become a pro at this now and the first lesson you learn when you or a loved one is diagnosed with cancer is that your mantra soon becomes "It is what it is," and you continue living life the best you can. Have I said lately that I hate f*cking cancer!

Thursday, October 6, 2011

and the results are in

Thank goodness UCLA is quick with their turnaround of PET CT scan results or I would have killed someone soon. Yeah, I know it's only been 24 hours or so but still it's painstaking to have to wait to find out what's transpiring inside of Paul's body. The good news is that everything seems to be shrinking. The three largest liver mets (there are six total) have all shrunk significantly. The largest liver met was 69mm x 52mm is now down to 55mm x 30mm. Basically it's gone from almost 3 inches down to just under 2. The other two measured 53 x 36 mm and 37 x 34mm, respectively they are now 37 x 22mm and 26 x 33mm. The largest met in his lung did grow by a millimeter and now measures 10 x 9mm from 8 x 7mm but it's showing less FDG activity (meaning active cancer). This small growth in the cancer world is considered stability despite me freaking out about it. But still despite the one lung met slightly growing everything is shrinking and most importantly there are no new tumors!

The bad news is that the radiation really did a number on Paul's internal organs which explains the insane pains that he has been experiencing. The lining of his bowels are now thickened and inflammed, which explains a lot about the pain he is constantly in. Unfortunately, there's not much we can do about it apart from wait to see if it calms itself down. In the meantime, we are still awaiting the approval for the Avastin and will continue with Xelox. At least for the most part it's good news so I shall have a drink in his honor. And yes, that smiley face above is an image from his CT scan of his lungs. I thought it was cute and more than appropriate.

Wednesday, October 5, 2011


It's time for Paul's first PET CT scan since he was diagnosed. This will tell us if the cancer is responding to all of the treatment and will also let us know if the tumors are shrinking. The test itself is easy - fast the night before, no strenuous exercise for 24 hours before the test, then drink what Paul has named the "Pina Colada" drink, which in all actuality is some kind of contrast and then be injected with a shot of some radioactive isotope. It states in the directions that he's not to be in contact with any children or pregnant women for up to 12 hours. I guess screw the rest of us, but save the kids and the breeders. Now let the waiting for the results begin....

Sunday, September 25, 2011

appetite for nothing

We are now onto our second round of the Xelox. So far it's been ok but Paul is still skeletal and can barely walk across our apartment without running out of breath. Getting him to eat is also a major chore. His taste buds are pretty much fried which is a result of the chemo since it not only kills off the cancer cells but it also obliterates the healthy cells. I've been told that everything tastes like cardboard.

He's slowly regaining some of the weight he lost last month but still it's a slow process and that's with eating full fat bastard foods (still trying our best at this healthier diet but instead of skim milk like we used to have, he gets organic full milk and real butter).

I tried to entice his appetite with some grilled chicken from a Middle Eastern restaurant which is one of his favorites. It didn't go well. Not only did he race to the bathroom before he even managed to get one bite down but he also vomited for the first time since this nightmare started. And now he can no longer even hear about Middle Eastern food or the sprouted bread without gagging so I have to look for other things that might appeal to him. Let's just hope this trend doesn't continue as it could result in him being admitted to the hospital whether he likes it or not.

In the mean time, the oncologist has told us to suspend the Xeloda. Let's just hope that this extended break will help ease all of the side effects and he can feel somewhat normal until his next chemo session in two weeks.

Friday, September 16, 2011

what's the magic number

Here we are for round 2 of what should be a minimum of 12 rounds of Xelox. The oncologist told us today that he is just awaiting approval from the insurance company to add Avastin to the mix. Avastin isn't a chemo drug as it doesn't fight the cancer. What it does is it attaches itself to a protein called Vascular Epidermal Growth Factor (VEGF) and it blocks the formation of new blood vessels to the tumors. Yet another cool biology lesson.

The good news is that after just one round of Xelox, Paul's CEA number has plummeted from 137 down to 95.6. You can just imagine the happy dance I did at work when I received the email from the doctor. Of course, it's still high but it's heading in the right direction at least.

Paul is getting used to the side effects and we are trying to figure out if there is any kind of pattern to the nausea, constipation, fatigue, etc. It's going to be a conundrum but I am sure we will figure it out somehow.

Sunday, September 4, 2011

our 20th shagiversary

Yup, 20 years today with the old codger. Where did the time go?

When I first found out about his diagnosis I made up my mind there and then that I would finally change my surname. It's been a bone of contention for years. I'm the last of my family name and although I have no real family to speak of, I was proud to let the name die out with me in a blaze of glory but it's always bugged Paul since we got married 14 years ago that I wouldn't become a Hornby. Hey, with the name, comes the streaks of bad luck so I was justified in avoiding it. But changing my name was the only thing that I could think of that only I could give him and honestly, it was a bit selfish on my part since I am figuring that it will make my life a bit easier when dealing with the health insurance company and the hospitals.
The actual name changing process wasn't that difficult. Headed down to Social Security where I thought I would be for hours and ended up being helped in less than 10 minutes. Then I headed over to the DMV where the wait was out the door but got my new horrible picture taken and my new license was on its way. I still have to do my passport, bank accounts and utility bills but those can all wait for right now.
It hasn't been easy keeping this secret from him but I did it. I got up early this morning and changed my name on Facebook and waited for him to wake up. Paul is a pain in the ass when he first wakes up so I had to wait a little bit until he was a little more semi-alert and then handed him my new social security card and said, "Look what I did." He didn't get it. So there was my moment thwarted. Oh well, all best intentions but secretly I know he was elated.

Saturday, August 27, 2011

the first bite is the sharpest

Now that radiation is over and Paul was given a short two week break to recover, the real chemo begins. We are on what they call the first line chemo regimen which consists of Oxaliplatin and Xeloda, also referred to as Xelox. Paul is not the type of person to read up on his illness. He doesn't want to know what the stats are or what possible side effects he might get. As he says, "That's why I have you." So of course, I spent hours reading up on this new chemo he was being given and was already anticipating the side effects which kick in pretty much immediately.

When he was just on Xeloda, the major side effects include something called hand-foot syndrome, which is a nasty case of extremely dry hands and feet that turn bright red and peel constantly. To combat this, patients are told to lotion their extremities multiple times a day every day with specific ointments (something my English patient is not adhering to that well). Also patients shouldn't be exposed to excessively warm temperatures and should refrain from chemicals such as washing up liquid. Yes, that means that all the housework is left to me since he can't be doing dishes (rubber gloves aren't the answer since they just trap in heat). His hands have peeled numerous times and he says that the skin feels so tight that he can hardly bend his fingers. Both his hands and feet are also bright red which is a result of the chemo seeping out his capillaries.

Now that they are adding Oxali to the mix, new side effects will include something called the first bite syndrome, which is basically a spasm in the jaw when you take your first few bites after infusion. Other lovely side effects are a sensitivity to anything cold, which is the last thing you need when it's 100 degrees outside and all you want is the air conditioning blasting cold air and something cold to drink. Of course, there are possible stomach/bathroom issues and nausea, fatigue, hair thinning, etc. But so far he's only had a few of them.

Most people have a port installed in their chest to help preserve their veins as Oxali can burn them out quite quickly but Paul refuses and we all have to honor his wishes with this and just hope that he doesn't do irreparable damage to himself.

The first infusion took about five hours. First we visit the oncologist for a check up and he collects bloodwork to make sure that his body can handle the infusion. Then we shuttle across the hall to the infusion center. You can just imagine the other patients' faces when we walk in since we are by no means the typical patient couple - him being the old rocker and me with my fire engine red hair. The infusion center is mainly made up of rows of big comfy reclining chairs with optional TV's that have DVD players attached. So we are introduced to our chemo nurse, Kat, who explains that first he will receive an IV of pre-chemo meds such as Decadron, a steroid which will halt any allergic reaction, along with some Zofran for nausea. He has already been taking Zofran orally and we have nicknamed it the dissolvey pill because you just put it on your tongue and it dissolves. Once that is finished, it's time for the big bag of Oxaliplatin. Kat warns us about the cold sensitivity and to call the doctor immediately if he has a fever of over 100.3 or if he starts to vomit.

The infusion goes smoothly and we return home and Paul goes to have something to eat and sure enough I hear him scream "What the f**k was that?" I asked him if it hurt when he took the first bite and he says that it did and what was it and why didn't I warn him. I told him that not all patients get that side effect and how I wasn't too sure what it was going to feel like and reassured him that it's normal and to remember to relax when it happens. This all spurs him to start singing "The First Bite is the Sharpest" ala Rod Stewart's The First Cut is the Deepest. Yes, we are easily amused.

Unfortunately the steroids that they gave him also caused him to be up all night. He likened it to being on speed and just lying awake in bed until the sun started rising but without any of the fun. Luckily the anti-nausea pills have worked but this whole steroid thing is getting to him. I'm sure as we continue this line of treatment his body will start adjusting to it. In the meantime, I'm envisioning him laying on the couch watching his beloved Ealing comedies to keep himself occupied.

Friday, August 26, 2011

what's the magic number

Some cancers can be tracked by what are called marker tests. For colorectal cancer, the standard marker test is called a CEA test, which is short for carcinoembryonic antigen. This test doesn't work on a large percentage of colorectal patients but Paul is in the lucky minority that it does work on. It is by no means a definitive test as an increase can be brought on by not only the cancer spreading or becoming more active but it can jump due to inflammation, allergies, arthritis and I'm sure a whole host of other causes.

The normal healthy non-smoker should have a result below 3, a healthy smoker registers in around 5. When Paul was diagnosed, he registered in at 105. Yes, that sounds insanely high but I have read people's stories who registered in the thousands. Remember it's just a marker test!. Every time we go to see the oncologist he runs this blood test along with a CBC to check on his platelets, red and white blood cells, etc. Basically he gets this test on average every third week and the results are usually emailed to me the day after which is usually on a Monday as it's easier on my schedule to take Paul to the doctor on a Friday.

When I get the email from the doctor, it is reminiscent of watching a horror film. I'll sit at my desk at work and cover my eyes and squint through my fingers to see what his new level is, then call Paul to let him guess what the number is and let him know the result, followed by texting friends the results as they follow up on his treatments.

The first magic number after he started chemo-radiation was 89.7 which we were ecstatic about. Unfortunately due to all of the complications from radiation, what with the new side pains and the newest problem of dehydration which has resulted in Paul having to be hydrated a few times via an IV at the infusion center, we were not too suprised when it started to jump back up to 112 in early August and then 119 a few days later. But today was the day we were dreading, it's now up to 137! I argued to myself whether or not to even tell Paul about the new score and at one point, I was just going to lie to him that the test came back inconclusive since I know how he can get demotivated quickly by bad news. But I opted to tell him the truth and reminded him that this was not definitive test and that the radiation had done a number on him and the rise was almost surely from internal imflamation. He took the news for what it was worth and we just carried on. After all, he started his new course of chemotherapy today so we can only assume that things are going to get better.

Thursday, August 4, 2011

first major set back

The radiation and chemo have finally taken an immense toll on Paul. He's now frail, always nauseous, always weak, always tired, and skeletal. The only good thing of this cancer thing is how skinny it makes you but it's not a nice skinny. When you can see someone's ribs without them sucking in their breath, I think there is a problem.

Unfortunately this has resulted in Paul not being able to complete the entire six weeks of radiation, which also means he doesn't get his radiation diploma. I rushed him to the oncologist when he could no longer eat without racing to the bathroom. It was the most insane thing I have ever witnessed. He didn't even need to take a bite of food before he would go running to the bog. He would force himself to eat at least a piece of bread so he could take his chemo pills but it was painful to watch him force himself to swallow, all the while gagging as it went down.

There's also a new side effect that he's getting where out of nowhere he is writhing, screaming and crying in pain. He refuses to go the ER and has threatened that if I call an ambulance he will just kick them in the face so my hands are tied. Luckily, two Vicodins seem to do the trick but they took forever to kick in. The oncologist is baffled what this could be and orders a small chemo break to see if any of these side effects will subside.

Have I mentioned that he also has a tan on the areas where the radiation was performed. One little burn mark as well but we are using some special cream that the radiation clinic gave us and it seems to be working. Another side note of radiation is that Paul has gotten an unexpected bikini waxing from it. Yup, out of nowhere, he's looking like a pre-pubescent boy in his nether regions. It makes you think if this is the damage that we can see, we can only imagine what it's doing to his insides. With any luck, it's destroying Timmy enough to either be removed surgically or simply become scar tissue but only time and a PET CT scan will tell.

Wednesday, July 27, 2011

a crash course on health insurance

I have been very fortunate for most of my life, in that I've been relatively healthy, and have always had health insurance. But when I was out of work for 15 months, I maintained our COBRA coverage for as long as I could and then I got a new job in June 2010 that did offer health insurance but not until you finished a six month probation period, something I have never encountered before in my life. So I had to let go of COBRA in July 2011 because we could no longer afford it, literally three days before Paul started to show any signs of being seriously ill. Once again Hornby luck strikes.

I also have never in my adult life had to deal with health insurance companies and now that they no longer even offer an HMO option, I had no idea about what PPO meant and how many hoops I would be jumping through.

The first nightmare I encountered was getting his Xeloda pills filled. Paul dealt with ordering the first course, since they need to be ordered and shipped to us. Why this has to be done is anyone's guess especially since the first bottle came from Cedars Sinai which is just down the street from us and I could have either picked it up or one of our good friends who works there could have gotten it. Paul had said that the woman mentioned some copay card that she would use when filling his prescription and he never thought to get the details or ask any questions about this and happily paid the $30 for the pills that would then be overnighted to us.

So when it came time for me to call in his refill, I called the CVS Caremark pharmacy number on the bottle and said we needed another set of pills. Turns out that the $30 charge for the first prescription was a mistake and that the real cost with our insurance for the pills would now be $150! I was driving to work at the time and had to pull over because I couldn't believe the hike in cost. I was then informed that it's a formulary drug and that the $150 price tag was a major savings as Xeloda retails for about $4,000+ a month!!!!! I gave the woman a credit card number and then called Paul to let him know about this and his response was, "well we can't afford that so I just won't take them." Of course, I told him that we would figure something out and that there was no way that he was going to stop his treatment. I also offered to go and pick up the drugs myself as I thought that it was just coming from Cedars, but I was informed that that too was a mistake and that the pills would now be coming from Chicago! They couldn't give me any reason for this but like most things with cancer, it is what it is.

It took me about two weeks to find out what this mystery copay card was that Paul was told about and I was pretty stunned that the social worker, who was well aware of our financial problems, didn't mention this. Turns out that Genentech, the manufacturer of Xeloda, offers copay assistance to those with insurance, oddly enough they do not offer this help to those without insurance or those on Medicare which makes no sense to me at all since those people really need the help. So I called them up and answered their questionnaire and voila, we qualified. Unfortunately, we couldn't get a refund on the $150 bottle but going forward they would pitch in 80% of the copay amount so the price went back down to $30.

One small win for us!

Thursday, July 21, 2011

zap zap zap

A pre-zap photo for you in case you were wondering what it looks like to get radiation therapy. And who would have guessed that they also play music for you while you are undergoing the laser.

Sunday, July 17, 2011

i'm a farmer now

When you first get diagnosed with cancer, the first thing you do is think what did I do wrong. Sure, it could have been caused by excess such as rich foods or too much alcohol or it could be genetic or it could just be bad luck. Immediately you start to change your diet. Hell, I even started farming in my own way by planting and cultivating wheatgrass in our bathtub and patio. For a city like LA that is known for its hippy healthy lifestyle, you try finding trays of wheatgrass to buy that won't require you to take out a loan. It's impossible, trust me I searched. Whole Foods - nope, Sprouts - nope, Trader Joe's - nope, Erewhon - nope but eureka - our local Pavilions sells it. I seriously went on a quest to find this elusive plant. What I didn't know is that you need a special juicer for wheatgrass because it's so dense that it will break most juicers. And just like the search for the plant, the hunt for a proper wheatgrass juicer was just as gruelling. I finally found a manual one at of all places, Home Depot.

You might be asking what's so damn special about wheatgrass? Well, one ounce of wheatgrass juice is equal to eating 2.5 pounds of vegetables. You basically get almost all of your daily nutrional needs in one shot. But this one shot must be consumed within ten minutes of juicing or it's futile. And don't be fooled by those big trays that I grew, it takes about half of a tray to get one ounce worth of juice! I hear it's not the most pleasant tasting stuff in the world but hey, it can't hurt the boy to have his daily dose. Plus soaking the seeds, rinsing the seeds, planting the seeds in what is called a blanket and watching it sprout and transporting it to the sun to grow, is keeping me busy with a new hobby. Now I know how Eva Gabor felt in Green Acres.

Saturday, July 16, 2011

money woes

Since Paul started getting sick back in July 2010, his ability to work has been hampered significantly. It doesn't help that we live in Los Angeles where in summer and autumn temperatures can reach the high 90's and 100's which is the last thing you need when you are experiencing stomach distress and trying to keep hydrated. This has left me being the sole breadwinner, which I have no issue with in the least but with the economy the way it is, it's most definitely a difficult task. (*side note I was laid off back in 2009 and it took me 15 months to find a new gig, which then turned out to be hellish to put it mildly. It's not like I didn't have 15+ years of experience, a university education, employers were either just not hiring or they don't want to pay the true worth of what the position deserves or in many cases, I was overqualified. I lost my job again in January 2011 and luckily landed the best job I've ever had in April but the only snag with this perfect job is that I am a contractor. Health insurance is offered to us but at a cost of $890 a month and trust me I don't make that much but with some creative financing, I have been able to offset this somehow, but I digress).

When we first started going to the radiation oncology clinic, we were introduced to a social worker. She was nice enough and obviously knew her stuff but unfortunately, she could offer us no help in the finance department. Turns out when you have been self-employed like Paul for the last few years and in an economy where getting work is now considered a privilege and reporting losses on job is the norm. He was 4 credits short. I asked the social worker if he could apply for any other programs and she said that he would not qualify as I made too much. I scoured the internet to find out exactly how much he could get if we tried for these other programs and basically after finding the 7 page formula on some government site, I would have to take a 66% pay cut in order for him to get a measly $100 a month. Hell, I even asked Social Security if I could give him some of my credits as I have more than enough to spare but sadly, they said that was a no go.

To add to all of this, I was to be made a full time employee July 1st but I had a gut feeling that now that Paul had been diagnosed this might affect his insurance coverage. On the day I was supposed to have my conversion interviews, I decided to call our insurance company and sure enough, by two weeks, he now was flagged as having a pre-existing condition and I was informed that none of his cancer related care would be covered. I had to tell my boss to suspend the interviews and asked if I could continue to be a contractor until November when the six month probation period would be over and Paul would no longer be considered pre-existing and all of his care would be covered. I am very fortunate to work for one of the best companies in the country and that I have one of the most understanding bosses in the world.
Things are tight but somehow we are managing. Between the almost $900 a month to keep our health insurance, the copays with the doctors, the prescriptions, the special lotions, soaps and lip balms that he needs, my feeble attempts at a more healthy diet, things aren't easy on the wallet. But you just find a way somehow. I often joke that the stress is going to kill me off long before the cancer gets him.

Monday, July 11, 2011

fast food, really!?!?!?!

Once a week we get to meet with the main radiation oncologist to check in and talk about side effects that Paul is having and how treatment is progressing. He's been having a really tough time with it. Nausea, extreme fatigue, dizzy spells, no appetite, one minute constipation, the next minute being tied to the toilet. Our usual doctor wasn't available to meet with us today so we ended up getting the head of the department. You would think that this would be a good thing. What transpired during this ten minute appointment had me wanting to go for his jugular. Paul has been losing a lot of weight lately so we brought that up to this quack. His answer, "You need to start eating junk food like fast food." We explained to him that we don't eat fast food at all and his reaction just floored us. He actually said that he felt sorry for us and that a pizza or a burger would be the best thing Paul could have right now. I brought up that we have cut back on sugar and are mainly eating whole foods like vegetables, sprouted whole grain breads, free range organic chicken (the surgeon had warned us that Paul should not consume beef as this could cause major problems with Timmy and his obstruction). This quack laughed at us. Paul just watched me trying not implode. We quickly got out of there and decided to not to listen to this loser and just drove in stunned silence then later joked about it. Just so you know most medical students are not taught about nutrition and, of course, nutritionists aren't covered by most health insurances, thus, you are pretty much on your own to figure it all out. Good times I tell you.

Thursday, July 7, 2011

puzzles and the prostate posse

It's the crack of dawn and off we go to the hospital for another zapping. It's become a routine now. Get up, get ready, take Sunset Blvd down to UCLA as the sun comes up, look for the closest handicap spot, walk up to campus, take the elevator down to the dungeon, which always takes forever. People will get in by accident and ask if it's going up and we tell them, "No, this one is going down to the dungeon, we don't think you want to go down there." Wait a few minutes to have your name called, Paul goes in and I sit in the waiting room and wait for about 15-30 minutes depending on if the machine is working that day or if they need to realign the laser. Then I can hear when the zapping starts and when it ends, wait for my English Patient to reemerge. Start heading out of the clinic, wait for Paul to make a pit stop for his morning cup of decaf (another thing cancer has taken away from him, no more caffeine as that will cause him to become dehydrated and that's one of the last things you want). Get back in the car, head back home, get the patient settled, if it's an extra early appointment and we haven't had to wait too long, I can sneak in a quick nap before heading out to work.

The waiting room at radiation has to be one of the most depressing places ever. There is a sad looking aquarium on one wall but you rarely see the fish. One can come to all sorts of conclusions why there are so few fish in there like: have they have been killed off due to all the radiation, are they just hiding because they are depressed. You get the picture. The beige walls are bare for the most part and there is the customary stack of out of date donated magazines to keep you occupied. But there is also a table in the middle of the room with a half-finished puzzle. I learn quickly that it's first come, first crack at the puzzle. So if no one is around I will sit there and take a stab at it. The other regulars sometimes get annoyed with me since there is some unwritten rule that no one seems to talk to each other and no one will ever join another stranger in completing it. It's just plain strange. There are two Russian men who really become territorial about the puzzle and it amuses me.

Since the clinic books all of your appointments for the span of your treatment all at once, you tend to have the same time every morning and you start seeing the same people each day. I have nicknamed the predominantly male patients, the Prostate Posse. Remember no one really speaks to each other but I overhear them talking to the nurses and the other techs around and figure out that most of them have prostate cancer. Some have traveled from out of state to LA to have their treatment at UCLA. Some are local. Some come in wearing workout gear and then after treatment, get changed into suits for a day at the office, which just stuns us since the combo of the chemo pills and daily radiation is quickly taking its toll on Paul and these other guys look like spring lambs compared to him. We just keep reminding ourselves that everyone reacts differently to treatment just like there is no generic type of cancer or treatment.

Apparently today was graduation day for one of the other patients. Turns out he has brain cancer and was having his last zap. The clinic gives all patients on their last appointment a diploma saying that they completed treatment and in the case of brain cancer patients, they get to receive the mold that was created to keep their head in the right place for the laser. I've told Paul we will frame his certificate when he is done with this. Only 20 more zaps to go.

spring lambs

Paul's interpretation of the other patients and how they are spring lambs. If I had waited two more days, he would not have been able to do this because the treatment is kicking his ass (pun intended)

Friday, July 1, 2011

Thursday, June 30, 2011

what the next 6 weeks look like

This is what 27 scheduled zaps look like on a calendar. Makes you feel like there is no end in sight but it is what it is.

Wednesday, June 29, 2011

to the dungeon you go for your first zap

Ever get the feeling that you are being set up for something bad, well, when you have cancer, you get to spend a lot of your time in a basement. In Paul's case, this involves daily visits to the basement at UCLA where he gets his daily zap for the next six weeks. We have affectionately dubbed it "The Dungeon."

The first plan of attack against Timmy and his mates is radiation oncology. What does that mean, you might ask? It means that not only will Paul have daily radiation of the pelvic region and lower back but he will also start his first chemo in the form of a pill called Xeloda. The oncologist gave Paul a choice at our first appointment: either have a port installed in his chest and do what is considered traditional chemotherapy in the form of 5-Fluorouracil or 5FU (I kind of love that it's called 5FU, it's like giving the big FU to cancer in a way), which would entail Paul wearing a pump for 48 hours and having the chemo continuously pumped into a vein in his chest or take it in pill form. Well, when given this choice, it was easy to opt for the pills - less mess and fuss. So twice a day, more particulary every 12 hours, Paul must eat at least a small meal and then take his chemo pills within 15-30 minutes. Now most people don't adhere to these "take with food" cautions on most medications, but in the case of Xeloda, the process of digestion is paramount for the pill to work. See, the pill isn't really chemo when you just ingest it. It must hit digesting food in order for it to transform into chemo. Kind of cool, right?

But back to radiation, first they gave Paul another CT scan so that they could map out where the primary tumor aka Timmy is and then they gave him teeny tiny pinpoint tattoos so that they can line up the laser to the specific point that they want to blast. Paul ended up with three of them but I only found two. I call one of them his tramp stamp since it's in that area of his lower back.

After this initial set up, they then do a dress rehearsal where they put you on the machine and do a test run sans radiation.

And Paul, being Paul, thinks he will be able to not only return to work, a thing he hasn't been able to do for the last few months thanks to being ill, but he truly thinks that he will be able to go to work after his morning zap, thus, he has booked all of his appointments for the next six weeks for 7:00am! Um, yeah, thanks darling! I, of course, demand to take him to all of his appointments as I serve as an interpreter for Paul since the doctors insist on speaking that mystical medical jargon as if everyone has gone to medical school. So the next few weeks, I should be a right bitch what with waking up at 5, getting him to radiation by 7, then back home, then to work. Thanks a lot cancer!

Monday, June 13, 2011

Colonoscopy Round 2

What barbaric masochistic bastard invented the prep for a colonoscopy? Seriously, that guy was one messed up dude. Thanks to Paul's first test not being a clean read after a sleepless night that involved drinking, every 30 minutes or so, some seriously nasty concoction that supposedly removes any trace of food from your body, he had the pleasure of doing it again. And not only just drink a gallon of this stuff but also a 2 day fast to ensure that he was completely void of any food in his system.

I sat there waiting in the waiting room for him to be done or for the doctor to have me sent to his room so he could inform us of his diagnosis. One would think you would have one's spouse in the room when you are telling them that they have Stage 4 cancer but, alas, Mr. Gastrolenterologist Man didn't think like that and used the excuse that no one could find me and god forbid, anyone try calling me on my cell phone.

And trust me I was in a hurry to get out of the waiting room since there was a family of ten  who were waiting for a loved one to get out of either a procedure or surgery and seemed to think that the hospital waiting room is the appropriate place for a tailgate party. Seriously, they had portable tv's with them that were being blared over the multiple tv's that were in the lounge, laughing, shouting loudly at each other and to complete the whole scenario they set up a picnic on the floor. I just sat in my little corner shooting death looks their way with a host of other people who were in no mood for their campfire. So if you happen to ever run into any of these people (see the gang in the corner of the room), feel free to kick them in the shins for me.

After about two hours, Paul emerged like nothing had happened. I asked him how it went and he told me how there was a woman, who was also in for a colonoscopy, who was a crying shaking mess and Paul, who now has suddenly become the expert in colonoscopies, managed to calm her down and make her laugh by accusing her of trying to take a cheeky look at his bum. If there's one thing the boy is good at it, it is to make light of any situation to take away its seriousness.

He told me that the doctor confirmed it was cancer and we opted to memoralize this event with a few cocktails at Barney's Beanery and then get ready to find out what the plan of action would be.

Saturday, June 11, 2011

the week of reckoning

Well don't we feel popular! For a man who never got sick for over 50 years, this whole cancer thing means he has a full dance card. It is the week from hell:

Monday - 2nd colonoscopy (prefaced with a 2 day fast and another gallon of salty bath water to drink)

Tuesday - our first appointment with an oncologist

Wednesday - our first appointment with the radiation oncologist

Thursday - the patient's birthday - nothing like getting the gift cancer, the gift that keeps giving, for your 52nd birthday

Friday - appointment with a surgeon

Friday, June 10, 2011

the day time stood still

After being severely ill for almost a year and not having any health insurance in this god foresaken country, Paul made an appointment for a full MOT on June 2, the day after our new insurance went into effect. On June 3,  he was told that he needed to have an immediate colonoscopy, which we had already assumed would be the next step. Over those preceding 11 months, we thought it might have been food poisoning, detox from not drinking (out of nowhere, Paul no longer fancied a bevvie, a sure sign that it was something serious), celiac disease or our latest guess of Crohn's disease. What came a week later, we never suspected - a diagnosis of Stage 4 colorectal cancer with metastases to the liver and lung (in layman's terms that means cancerous tumors in the liver and lung also refered to as mets). The main tumor in his colon was quickly named Timmy the F*cking Tumor and he was causing a 99% obstruction.

Of course, Hornby luck would be in full effect and the first colonoscopy which was performed on June 9th did not provide a good read of Timmy's true extent, so Paul had to retake the test which involves one of the most barbaric preps in all of medical history and had the pleasure of  having yet another camera insertion on June 13. To demonstrate Hornby luck a little bit more, the doctor had informed Paul that he had cancer while he was still coming out of anesthesia so Paul had no idea why he was being wheeled immediately down to the CT scan area of the hospital for further tests. I only knew something was up because I took a peek at his bloodwork and all of his levels were all over the place. But no one that day told us. By the time we got home that afternoon, we came home to  voicemails from two medical offices: a surgeon and one that was a garbled message that we decided to disregard until the morning since we were both exhausted.

The next morning came and after listening to the garbled message about five times, I finally managed to make out what the phone number was and googled it. My worst fear was confirmed. The message was from an oncologist's office. Paul had woken up and asked me in a sleepy haze if I had figured out the message and I said that I had and he then asked, "Well what was it." I replied, "It was from an oncologist." His next questions was, "What the hell is that." I meekily replied, "It's a cancer doctor," and then ran out the door already late for work reminding him to call the gastronentrologist and have the scan results sent to me at work.

About an hour later, I sat at work staring blindly at the scan results that said in big bold letters, "DIAGNOSIS: STAGE IV COLORECTAL CANCER WITH METATASTASES TO THE LIVER AND LUNG." I not only totally broke down but became enraged at the doctor, flew across town and confronted  him in his office where he explained that he thought Paul was alert and awake when he had informed him that he had cancer.

The question on my mind was "How do I tell my best friend he has Stage 4 cancer?" The answer was I didn't and, of course, the doctor didn't follow through with my request of calling us that evening to tell him. So there I sat for three days knowing the worst news ever and having to just keep it to myself until his next scan on the 13th. This is when I learned quickly that the caregiver's secret weapon in times like this is Vitamin Xanax. Needless to say, it was a long weekend.