Cancer is a numbers game. While it is painful, scary and obnoxious, it’s also a game of numbers. And for me, that’s not a good thing. As my husband likes to say, “I didn’t marry you for your math skills.” Numbers make me nervous. We rely on numbers for so many things. They are WAY too logical for me. I like words. They have a lot more flexibility.
My life now revolves around various sets of numbers. The first is blood counts. Every week (and I mean EVERY WEEK), I trek 34 miles to the hospital to have blood drawn. Since my chemo therapy is on the 3-week cycle, two of those visits are just to check my blood counts. I closely follow my hemoglobin number (always low) which tells me where my anemia is that particular week, my platelet count (which tells me how my blood thinners are working) and my neutrophil count. For those not familiar with the chemistry of white blood cells, your neutrophils are the specific white blood cells that are the infection fighters. Those cells are key to chemo. And chemo is not kind to blood cells, neutrophils in particular. Mine are at .7 right now. Normal is 2.2-3.6. That might not sound like a lot, but it is. Low neutrophils mean you go on what I affectionately term “lock down.” I am confined to my cell (home) and not permitted to leave unless it’s to go to the oncologist or the chemotherapy center. It’s a lot like a prisoner in solitary being permitted to use the exercise yard with no equipment. You get out, but you’re still confined.
I follow these numbers because if they dip too low, I need additional treatment. When the red cells go too low, I need a blood transfusion. If the white cells don’t bounce back, your chemo gets pushed back until they do pop up. Then you get a wonderful shot right after chemo called Neulasta. It’s a neutrophil booster, but makes your bones hurt really bad. White blood cells are made in the marrow of your long bones (arms and legs) so you feel like crap from being poisoned, then you get something that makes your bones ache for a day or two. Ain’t chemo grand?
While I follow the numbers, my husband obsesses over them. He has them tracked on his phone. If he hasn’t heard from me on lab days within an hour of the blood draw, he’s texting me about the numbers. Once he gets them, he sometimes calculates the percentage gain or loss each week. This used to bug me, but I figured he is an engineer so he’s into numbers. Then I realized that since he can’t do anything to “make me better,” the only control he has is to track numbers. I’ve learned to just text them and graciously accept his help in keeping them straight.
Before you get chemo, you have blood drawn to ensure that your blood counts are stable. They also check to be sure that kidney and liver function are within acceptable levels. If everything meets acceptable levels, then you get your infusion and the whole 3-week cycle starts again. If not, everything gets pushed out until the whole mess starts again. It’s a lot like being on a merry-go-round that slows down, but not enough for you to actually get off.
There is one number, however, that I obsess over. Anyone who’s had cancer knows why I obsess. It’s my tumor marker. Ovarian cancer has a specific tumor marker called CA125. As a screening tool, it’s notoriously unreliable. Approximately 50% of the women with ovarian cancer will have a normal CA125 reading and about 50% of women without ovarian cancer will have a false positive. All kinds of things skew it, like inflammation, fibroids, benign cysts. Despite it’s unreliability, it’s the best we’ve got right now.
Initially, I thought mine was unreliable. Any reading less than 35.1 is considered normal. My first CA125 run on August 29th was 125. My Gyn told me not to worry since I had huge fibroids and he was fairly certain that they cyst on my ovary was benign. When the test was run again on October 12th at my pre-op visit, it had skyrocketed to 694.3. Obviously, I had a fast growing tumor. I’ve always tried to be an overachiever.
After my diagnosis, my oncologist explained that the CA125 would be a marker to track how my body was responding to treatment. He explained that the first reading would probably not be a good one since I was still post-op and would have lots of swelling. It did drop, however, to 252. Then it was stuck for the next 6 weeks. It actually went up to 258, then back down to 239.4. Despite his assurances that he was certain he “got everything” and had requested over 400 slides be reviewed from the organs and biopsies he had taken, I was certain the monster was still lurking in my body. The numbers game of tracking my tumor marker was becoming my obsession.
Yesterday, I made by every 3 week pre-chemo visit to my oncologist. These visits are usually the same. I answer questions about my side effects, how I feel in general and any new symptoms. My vitals are taken. My normally low blood pressure is always high, another number I obsess about since both my parents have high blood pressure. It’s the fear of the CA125. I was sure it was still elevated and I was going to face a CT scan earlier than anticipated (they are generally done after chemo). After this, I get to undergo yet another pelvic exam. These used to bother me. Now it’s alot like getting my teeth cleaned. It doesn’t hurt and I zone out.
Yesterday, my appointment was with the Physician’s Assistant, Liz. I’ve always liked Liz. She has a wonderful sense of humor and a gentle demeanor (unlike my oncologist). She came in and told me she had news for me. I prepared for the worst. As I said, numbers aren’t flexible and there is no play in the CA125. She then said some of the sweetest words any cancer patient can hear, “Your tumor marker finally dropped!” I bet my blood pressure dropped 25 points on the spot.
My CA125 number is now exactly where it’s supposed to be, slightly elevated. It went from 239.4 before Christmas to 52.6 last Friday. While it’s still high, I am exceedingly grateful to God, Taxol and Carboplatin for getting the number down. My hope is that is will continue to drop and by the end of this mess, it will be below 35 and I can try to get some semblance of normalcy back.
I still don’t like numbers. They are still far too logical and many times make no sense to me. But today I am blessed to have 52.6 be my number.