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.

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.

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.