I was looking up the drug Neupogen, or Neulasta, one or the other of which was the shot given me in the hospital for low white cell count, and came across a blog written by a woman whose stage 4 ovarian cancer had returned a year after her first diagnosis. She had written an entertaining piece about her day-long adventure seeking a shot of the bone marrow stimulating factor from a Kaiser medical facility. I had been wondering how long the drug might stay in my system; from what I gathered the Neupogen was a once a day shot and the Neulasta was long-acting. Kaiser apparently uses them both, and I’m still not sure which one I was given. I’m guessing it was Neulasta though, since they only gave me one shot.
The blogger, Marilyn, had apparently started writing her blog after the cancer’s recurrence, with an objective similar to mine of sharing her experience to inform and enlighten others. It also seems she recognized the benefits of facing the cancer challenge with some levity and objectivity. One difference between our two blogs, though, is that she wrote multiple times a month from 2012 to 2014. I like to think I’ve grown out of comparing myself to others, but besides being prolific, Marilyn addressed her experience, thoughts and feelings associated with her cancer journey and her life through a heightened sensibility and detailed precision I can only admire. She was a skilled and apparently dedicated writer, and she put me to shame a bit in regard to my own haphazard approach to writing. She had also done research about Neulasta, which she reported stayed active in the body for 14 days and cost $3,000 to $7,000 a shot. She made a point of acknowledging how lucky she was to have Kaiser, a sentiment with which I fully agree.
I started reading her other posts, first the most recent and then the first one, written shortly after learning of the cancer’s recurrence. I jumped back and forth, at first trying to track her response to treatment and then settling into her engaging and spiritually-seasoned approach to challenge, hope, humor, friendship, pain, frustration, whimsy, fear and death. I bookmarked it so I could go back at will. I can’t remember if it’s okay to link to others’ blogs (I think I remember reading somewhere we aren’t supposed to link to our own), but I’ll take the chance. If anyone wants to take a dive into the personal depths of ovarian cancer, the first entry is at https://guldanm.wordpress.com/2012/10/14/losing-my-hair-round-two/.
I think I swam out too far here; not sure where the shore is. I probably started writing about this because I’ve been bothered by leg and foot pain at night, to the extent of having to take Tylenol in order to sleep. I’ve been managing to avoid pain medications for the most part. These pains are persistent aches punctuated by a sharp jab from time to time. The persistent ache is like a stomach ache you can’t ignore, and the more I lie still the more apparent the ache becomes, especially just under my kneecaps. During the day, I get jabs on occasion, but it’s only when I’m still that the ache seems to develop. Not much pain elsewhere, just the usual intestinal gripes and sometimes a shooting pain in my back or arm. So I was looking up the drugs that stimulate the bone marrow to produce blood cells because I had heard they can cause bone pain. Makes sense, but my bone pain didn’t appear until almost 10 days after the shot, so I can’t say for sure it was that. My guess is it’s an extension of the peripheral neuropathy I’ve experienced only as numb, tingling fingertips and pretty loud tinnitus (high intensity transformer and metallic cricket sounds). The other, predictable, side effects of this last chemo are fading, and I had my first energetic day today, which I used to pull a few weeds and fill some water jugs in my sparse veggie garden. Wore gloves, of course, this being the beginning of the immunity slump.
So it was, from trying to figure out the bone pain, that I entered Marilyn’s blog and immersed myself in the world of a woman stoically entering what appears to be the final chapter of her life. Her last post was a piece about the teddy bear a friend had given her when she was hospitalized at her initial diagnosis, and her conversation with the bear about who would have custody of him after her death. A poignant piece. I can only hope when it’s my turn for hospice care and I’m charged with saying my goodbyes through a curtain of drugs, that I’ll continue to wear my philosophical coat of mail as I trot ahead toward my next adventure.
For now I’ll continue to hope I won’t be on that road for a few more years, at least now bolstered by a note from my oncologist informing me that at the blood test before my surgery in February, my CA 125 level had already dropped from 1538 down to 40. They only test it every three months, so I’m looking forward to seeing May’s results once this round of chemo is done.