Today sucked. Our Spa visit set the new bar for crappy. At one point, we had at least four nurses, two pharmacists and two EKG machines working on Maggie at one time. But I’m getting ahead of myself.
Last night neither of us slept well in anticipation of all the excitement. The alarm went off at 7:00AM but we spent some quiet time holding each other, just happy to be together. It was great and if I could have I would have frozen time right then. But we couldn’t wish the world away so we rolled out of bed at 7:15AM to head to The Spa. The car ride was a long trip filled with tears and sad reflection. Our typical bounce was noticeably absent this morning when we walked through the doors of The Spa.
Like last time, we had a tough time getting the portacath flowing. And like last time, Nurse Sharron went to town on the plunger of the syringe, pumping and pulling and finally getting it working. While she worked, Maggie shared the latest news through very watery eyes and got us all crying.
Dr Loukas didn’t pull any punches with the details. There are three new tumors: one in the lower lobe of the left lung, one in the lower lobe of the right lung and one just to the left of the center of her breast bone about 2.4 cm x 2 cm in size. The tumors in the liver celebrated our three month chemo break by having a let’s-grow-bigger party. One has increased in size from 8 cm to larger than 9 cm.
The plan (when we walked out of his office, at least) was to start CPT-11, Xeloda, and Erbitux. CPT-11 every three weeks. Xeloda, four pills twice a day (eight total daily) for seven days on and seven days off. Erbitux every week. Both CPT-11 and Xeloda we have had before, way back when we started this journey back when Maggie was back in law school. It sucked back then. Let’s hope it’s better this time around.
Dr. Loukas said that the new tumors may well have been around since the beginning but we just didn’t see them because the current scanning technology can only see tumors that are at least 3-4 mm. And when we attacked the liver tumors with the magic whammy juice it shrank these “new” little bastards down to almost nothing – “almost” being the key word here. He reiterated that this was why he never felt Maggie was a good candidate for surgery. Had we gone through the major surgery we’d still be facing these same “new” tumors. I can imagine that this discovery post-surgery would have been an incredibly tough pill to swallow.
One key critical detail is that there is a real chance that this chemo will not work. When ever tumors are exposed to chemo, just to show how stubborn they can be, sometimes they do not respond. This is totally dependant on various, easily-quantifiable factors such as the genetic makeup of the tumors, moon phases in August, the number of flees on a three-humped camel in Bali, and the specific gravity of our dog, Niko’s third skat of the day. However, as we all know (and have been thrilled about), the particular tumors we have been dealing with responded extremely well. Otherwise, as Dr. Loukas reminded us again today, this game would have been over about a year and six months ago. Because they did respond so well there’s a significant chance they will respond well again. HOWEVER (this is sooo much fun!) BECAUSE they’ve been exposed to this particular type of chemo before, they may be resistant this time around. Fantastic! But Dr. Loukas is quick to point out that the significant length of time between her last CPT-11 round (about a year) works in our favor to increase the likelihood that the tumors won’t know what hit them, just like last time. In a nutshell, maybe it’ll work. Maybe it won’t. We’ll be holding our breath. How long till we know, you ask? Two months-ish.
Brace yourself for a kick in the nuts. If the CPT-11/Xeloda/Erbitux combo doesn’t work then we move into the experimental phase of Chris and Maggie’s Great Cancer Adventure. In other words, we’ve exhausted the short list of proven effective chemo drugs for colon cancer and, frankly, it’s not a place we want to be.
Now, with CPT-11 and Xeloda, out goes the hair. Maggie’s none to happy about that but she’s a real trooper and is dealing positively. We’ve been through this before and, well, the alternative is rather unpleasant. She’s got about two to three weeks to enjoy her new, exciting look. What new look, you ask? (My, you sure are full of questions today!) Well, I can’t tell you. But I’ll post pictures as soon as I have them.
The new drug in the mix is called Erbitux. It’s a very new chemo drug in the same biologic family as Avastin called monoclonal antibodies. It attacks the EGFR in the body, a protein (I think) found in epidermal cells and some* colon cancer tumors. It has a number of side effects but the one most commonly associated with Erbitux is massive, full-body acne-like skin rashes. Perfect. Just perfect. But the worse the acne, the better it’s working against the EGFR-containing tissue, including the tumors.
*Notice I said “some.” Not all colon cancers express the EGFR gene. If a tumor doesn’t, Erbitux is definitely less effective if not totally useless. We don’t have any proof that the tumors that are screwing with our life express the EGFR gene although I asked Dr. Loukas to find out. But here’s the screwy part. If they do express the EGFR gene then it’s a no-brainer. But if they don’t, it’s questionable and there’s evidence to show that the treatment sometimes works. Ah, sometimes. Love that word. But we could be experiencing all these fun side effects just for fun.
By 10AM we finally get into the infusion room where all the liquids start flowing. In preparation for the Erbitux, they give Maggie an intravenous dose of Benadryl (50 mg, I think.) It hit Maggie like a truck. She was instantly looped and nauseated. I raced to open a vomit bag I brought with me while Nurse Sharron and another nurse came running with wet rags and attention. After a few minutes her stomach calmed but her loopiness stuck around. I should have recognized the obvious foreshadowing then, packed up our stuff and gone home. It would have been a better day.
Like a lot of drugs these days, Erbitux is made with the help of mice. As a result of the rodent assistance, a little bit of mice protein and other pieces-parts get into the drugs. Different drugs have different amounts of mice cooties and Erbitux is known to really push the envelope. Knowing this I carefully checked the little Erbitux bag for hair and droppings but it looked clean to me so I gave the nurse the nod. The bag was very small, just a tester, they told me, because some people have a reaction to the mice cooties. A very rare reaction, they assured. Nonetheless, the Benadryl was a preventative, a just-in-case. The plan was to give her the tester and wait 30 minutes to see what happens.
Forty minutes after the tester was finished Maggie started saying she was cold. Now, it is cold in The Spa but typically her two or three blankets work fine. I got her a few more blankets and a heat pack. No biggie. Nature was calling so Nurse Jolie, who was visiting to bring lunch, helped Maggie to the bathroom. (Continuous intravenous fluids make you pee a lot.) By the time she returned and sat down she was noticeably shivering. I got yet another blanket and Nurse Sharron brought us a thicker blanket from the secret nice-blanket stash in the back. Within 30 seconds Maggie wasn’t shivering any more, She was damn near convulsing. Her whole body was shaking uncontrollably. The panicked, confused look on Maggie’s face just ripped through my soul. Her neck muscles were locked and her jaw was just chattering away. Between surges of convulsions she was complaining that her muscles were hurting. No kidding. It was just an awful scene to behold. I can’t imagine how it was for Maggie. I was holding her head and her jaw while reminding her to breath. Nurse Jolie was tucking blankets and holding her legs while reminding her to breath. And The Spa nurses were scurrying about trying to get the right drugs to squash this latest round of side effects. Twenty-five milligrams of Demerol into the IV and things started to slowly return to normal. It took about five minutes but she finally quit shaking. Rigors, is what they called it. And it’s a common adverse side effect from the initial dosage of Erbitux. No big deal. Tell that to my breaking heart.
After that fun, we got the typical pre-chemo drugs Aloxi and a steroid. Aloxi steadies the stomach and is quite expensive. The steroid plays a vital role but I can’t recall what it does at this time. Then we started the Erbitux again but this time the whole big bag. “Don’t worry,” Nurse Sharron said, “The reaction we saw is just the body being introduced to the new drug.” It kind of made sense to me so, especially with the Demerol in her system so, I thought, let’s get this show on the road. By now it’s after noon.
They hooked up the big bag of Erbitux at 1PM to be dripped over two hours. I know from past experience that the CPT-11 takes 90 minutes. That would put us back home about 5:30PM. Well, we were early getting home. But that’s because we never got the CPT-11 or the rest of the Erbitux.
About ten minutes into the full bag of Erbitux Maggie told me she was had some nausea. No biggie so we stopped the Erbitux and switched over to the Mack Daddy of all nausea drugs called Me-dont-tho’up*. That helped so we restarted the Erbitux. Not long after, Maggie started complaining about being too hot. She started dropping blankets as I wet the back of her neck, legs, torso, face, shoulders, etc. She was also very nauseous and alternatingly sitting up leaned over, prepped for puke, and laying back wiggling around trying to get comfortable. Somewhere during this time she started complaining that her arm was hurting badly. It was pulsing pain up from her wrist, through her shoulder and into her chest. Yikes. And then her stomach started hurting. By this time, the nurse staff was fully engaged.
* No, it’s not really called Me-dont-tho’up.
I just can’t remember the name of it. I finally remembered. It’s called Emend. Good stuff.
Maggie’s face was ashen grey and her eyes were rolling into her head. It was sickening sight. She was struggling to hold herself up and pools of sweat were beginning to wet her clothes. At one point her face turned green. At another her face was ghost white. All the while she was insistent: “My arm hurts. My stomach hurts. I’m really hot.”
Helpless, I continued to wet napkin bath but with more vigilence. Fearing her to be falling into some sort of incoherence I tried to keep her talking. But she really didn’t want to talk at this particular time. Now, you know Maggie. And she didn’t, really didn’t, want to talk. It was traumatic. I was scared for her life.
Nurse Sharron called for Dr. Loukas while she had another nurse bring in a machine called the Crisis something-er-other. Yup, that was the label on the machine (well, part of it, obviously). They connected a bunch of sticky dots onto her chest and pelvis, attached a bunch of wires to the dots, turned on the machine and watched the little graph bounce up and down. Apparently, they didn’t like what they saw enough to call in the OTHER machine.
While we waited on the new EKG machine, we got up to “walk it off.” We made it about three steps when Maggie paused in mid-step and wanted to lie down in the floor. She was rocking back and forth, covered in sweat and was white like a ghost. I tried to convinced her to sit back in the chair. She was unresponsive so Nurse Sharron and I managed to maneuver her back where she sat barely on the edge, wobbling. She didn’t want to sit back because her stomach hurt so badly. And the arm she was using to hold herself up with, stubborn girl, was trembling under the slight weight of her barely leaning upper body while her face continued to cycle through the colors of green, grey and white.
Nurse Sharron was extremely concerned. She said that she hadn’t seen this reaction before. Maybe it was the Demerol. Maybe it was something else. She is our friend and was feeling the same emotional pain I was although maybe not to quite the same degree but it was clear she felt anxious.
In an attempt to further classify what was happening, Nurse Sharron ordered a quick blood pressure, heart rate and oxygen level check. Maggie’s blood pressure was 90/50. Not good, apparently. Maggie turned green to show she agreed. After that Nurse Sharron pulled the Erbitux line. Even the pharmacists were mulling about, checking Maggie’s chart and contemplating errant interactions. Nurse Sharron even questioned us on lunch details searching for maybe a hint of why. I blamed the tomatoes which apparently wasn’t funny at that particular time.
The new machine arrived. It was much bigger, the size of a medium-sized suit case and came with its own nurse. The accompanying nurse introduced herself to a barely-responsive Maggie and began to place ten or twelve new sticky pads on Maggie’s arms and torso (apparently the already in-place sticky pads from the first machine wouldn’t do). We had to lay Maggie down flat for this measurement. Maggie was still fairly vocal about her arm and her stomach but we were in triage mode now and the staff was clearly more interested in her heart and breathing. Good call, I suppose. Once the new machine was hooked up it spit out a page of squiggles that no less than three nurses examined. About that time Dr. Loukas appeared and he looked worried. He said, as sarcastically as he could muster, “A very small percentage of people have a reaction to Erbitux and you have to be one of them.” It was kind of funny at the time but I doubt Maggie remembers it.
Dr. Loukas had the wires to the EKG pulled so he could use his trusty stethoscope to give Maggie a quick listen-to. He said her heart sounded good (which was good to hear) and then gave a name to this mess that I don’t recall. Essentially he said that Maggie had crashed and this is when I thought for certain he would give us the marching orders into the hospital. But he didn’t. He talked with Maggie and me (mostly me) about what our next steps could be.
He felt that giving Maggie her chemo today would amount to torture (my word, not his) and suggested that we wait until Tuesday. However, if Maggie got her chemo on Tuesday then she’d be out almost the entire week. The other option was Friday but Florencia’s wedding is Saturday and Maggie plays a key role. We agreed that Monday the 9th was the best option. It sucks to wait.
We also agreed that getting Erbitux was probably not the best plan moving forward. However, apparently, there’s a different drug that is chemically similar but doesn’t have the mice cooties. We’ll be doing this all again soon but with that drug. Let’s hope for a different type of day. This other drug has the exact same properties as Erbitux including the horrendous acne/rash issues but hopefully won’t be quite as memorable of an experience when we get it.
As Dr. Loukas is leaving he orders the attending nurse to disconnect all fluids in an attempt to treat Maggie’s mysterious arm pain. Yeah, it was still hurting just as much. She nearly immediately fell asleep. I was so happy to see her sleep after all she’d been through today that it was probably the happiest I’d been since 7:05AM this morning. Time was about 3:30PM. And, finally, all was quiet.
She slept soundly until about 4:30PM. Slowly the color returned to her face. When she woke up she had energy back in her voice and things seemed like they had returned to… well… what is now our “normal”. I was relieved. Slowly we packed up and went home.
Now, since you are probably not keeping score, let’s review:
* Went in at 8:00AM because of new tumors
* Dr says start chemo: CPT-11, Erbitux, and Xeloda
* Got a taster of Erbitux
* Fun stuff happens
* We leave
Despite the goal, we got no treatment today for The Cancer, despite all our fun. None. Zero. Zip. Nada. Today we spent nine hours of misery and accomplished nothing other than the absolute torture of my sweetheart. Less important but significant, neither of us got any work done. We spent (or I suppose our insurance spent) thousands of dollars on care and medication. And the emotional cost of today is just off the charts.
My mom, Mom Nickie, once told me that she appreciated that I tended to end my posts with a positive note, a lesson learned or something that seemed to transcend the fray. I’m struggling right now to come up with anything positive to say about this day. Of course, I can say crap like “at least we have another day together” or “at least we learned that we shouldn’t use Erbitux” but right now, after what Maggie and I experienced, I’m struggling to find anything positive about today at all. All except for those wonderful fifteen minutes this morning in bed after the alarm clock went off that we snuggled, wishing the world would just go away.