9-19-19 some eye closing experiences
Things have taken some unexpected turns for the worse in the last 3 weeks so I didn't want to write until we closer to the bottom of it. Short story, my leukemia has been feeling restless and has set-off out of the bloodstream to colonize new soft tissue territory throughout my body. And then multiply there. This is not unusual for this Leukemia to take on this lymphoma form. And it doesn’t often change the treatment either. The tumors respond to chemo and immunotherapy just like their counterparts in the bloodstream. Technically my disease is Acute Lymphoblastic Leukemia-lymphoma, so it’s not leaving its wheelhouse. I’m glad I have had some experience with a tumor as to stop me from really freaking out. I had a tumor behind my ear in 2017, an even scarier location being in the CNS, that dissipated with a few rounds of steroids and methotrexate to the CNS. But currently, a CT scan done yesterday of my abdomen and chest show multiple pockets of tumors throughout the region. And then, of course the tumor that brought all this to our attention, was in my face.
It started with an eye twinge that I thought nothing of, and then more and more swelling around the eye, until an MRI scan found a mass under my left cheek bone. Then an hour after finding out this news (it is now Friday at 3pm), I went to my ENT appt up at Kaiser on Cap Hill. Thankfully he had been coordinating with the on-call radiologist, and Dr. Cassaday, to collect a sample of the mass to confirm what it is. Turns out radiology across the street could fit me in for a tissue sample from my cheek by the end of the day, with the benefit at least getting a sample sent to the lab before the weekend--no results til Monday though. For a rare feeling in the medical world, logistically this all worked out, which was only a small consolation to the fact we were all 99% sure I had a tumor behind my cheek. In the end, we got the sample to the lab and it didn’t hurt as bad as I thought. As you can imagine, any needle trying to extract something behind your cheekbone is a scary proposition--”better not poke an eye out with that thing” has never been more pertinent--but it went just fine. The doc went in just above my beard line using ultrasound to make it safe, and I barely felt a thing with all the local anesthesia. Over the weekend the swelling increased and was irritating and affected my vision, essentially swelling one eye shut, plus it also made my jaw hurt and front teeth numb, so eating hard cookies became unsuccessful--so I just ate more ice cream. I’ve been wearing sunglasses essentially everywhere outside the home, indoors too, which might have raised a few eyebrows in our cloudy September weather. Cuase it’s a weird malady in that there’s no bruising, just swelling, so it’s clearly not a black-eye situation which could be more easily summed up by the public, and I didn’t want people to think I was walking around with pink eye either. Dr. Cassaday wanted to make sure that if things got too painful before we saw him again or the vision got too blurry we would need to check into the ER at UWMC and start steroids ASAP to reduce the swelling right-away. Thankfully this did not occur and the swelling didn’t progress in a dangerous way, but the threat did mean we cancelled our Leavenworth getaway trip for just the two of us. Don’t know when we’ll get that back on the books.
Today, I’m checking into the 8th floor again at UWMC. We’re gonna try some cytarabine, which is a drug that has worked well for me in the past, and is known to be effective against tumors. Hopefully I’ll respond well again. If all goes to plan, it's just a 3-day stay.
Basic idea of eye swell
Alpen trying to shoot on 10 ft hoop with soccer ball. pic at peak height.
It started with an eye twinge that I thought nothing of, and then more and more swelling around the eye, until an MRI scan found a mass under my left cheek bone. Then an hour after finding out this news (it is now Friday at 3pm), I went to my ENT appt up at Kaiser on Cap Hill. Thankfully he had been coordinating with the on-call radiologist, and Dr. Cassaday, to collect a sample of the mass to confirm what it is. Turns out radiology across the street could fit me in for a tissue sample from my cheek by the end of the day, with the benefit at least getting a sample sent to the lab before the weekend--no results til Monday though. For a rare feeling in the medical world, logistically this all worked out, which was only a small consolation to the fact we were all 99% sure I had a tumor behind my cheek. In the end, we got the sample to the lab and it didn’t hurt as bad as I thought. As you can imagine, any needle trying to extract something behind your cheekbone is a scary proposition--”better not poke an eye out with that thing” has never been more pertinent--but it went just fine. The doc went in just above my beard line using ultrasound to make it safe, and I barely felt a thing with all the local anesthesia. Over the weekend the swelling increased and was irritating and affected my vision, essentially swelling one eye shut, plus it also made my jaw hurt and front teeth numb, so eating hard cookies became unsuccessful--so I just ate more ice cream. I’ve been wearing sunglasses essentially everywhere outside the home, indoors too, which might have raised a few eyebrows in our cloudy September weather. Cuase it’s a weird malady in that there’s no bruising, just swelling, so it’s clearly not a black-eye situation which could be more easily summed up by the public, and I didn’t want people to think I was walking around with pink eye either. Dr. Cassaday wanted to make sure that if things got too painful before we saw him again or the vision got too blurry we would need to check into the ER at UWMC and start steroids ASAP to reduce the swelling right-away. Thankfully this did not occur and the swelling didn’t progress in a dangerous way, but the threat did mean we cancelled our Leavenworth getaway trip for just the two of us. Don’t know when we’ll get that back on the books.
Today, I’m checking into the 8th floor again at UWMC. We’re gonna try some cytarabine, which is a drug that has worked well for me in the past, and is known to be effective against tumors. Hopefully I’ll respond well again. If all goes to plan, it's just a 3-day stay.
Basic idea of eye swell
Alpen trying to shoot on 10 ft hoop with soccer ball. pic at peak height.
Alpen certainly has some aspirational goals. Shoot for the moon! Hoping the cytarabine does the trick. =)
ReplyDeleteWhat the heckkkkkk. So infuriating but glad that in at least some ways this fits in the "charted territory" category. I'm obsessed with the Alpen ballin' photo! Both of those kids absolutely on the edge of their seats to see if it's gonna make it in. <3
ReplyDeleteAs my sister says, "Hands folded and fingers crossed" that the cytarbine will work perfectly. Something is certainly working because the cheek swelling was way reduced when I saw you this morning at Litl' Kickers soccer playtime. More ball fun for Alpen and a hoot for the parents and grans.
ReplyDeleteJust back from biking in Deutschland last night, so we’re behind on your news. The tumors sound scary, but I hope the Cytarabine and maybe some Prednisone did the trick. We’ll be leaving a care package on your porch this afternoon.
ReplyDeleteLike Susan, we've been a little out of contact. This all does sound not fun at all. That care package may not show up today, but soon.
ReplyDelete