Lovebuch family happenings

Over the hump now of the week, had the 3rd of 5 Ommaya port taps this morning, so past the hump on that one. On Monday, I had one infusion to treat the bone-marrow part, the Daunorubicin, but the team held the Vincristine because of an increasing amount of neuropathy in my hands over the previous week. An interesting aspect of the Daunorubicin is the red-color of it. This week I went pee 20 minutes after the infusion, and my pee already had red tinge to it. Shows how quickly the bodily systems work: from blood stream to urine in 20 minutes. Fascinating. I took Dexamethasone (20mg, two-days in a row) to start the week, This week I experimented with taking the full dose in the morning, instead of half in the morning and half in the afternoon, which was better because I felt sleepier at bed-time. I didn't do this the first week because I tried morning-loading two years ago, and I thought the all-at-once cortical steroid rush to be too unpleasant.  However, this week taking it all in t...

On Monday evening, I got my first round of systemic chemo, which is the chemo to fight the likely leukemia cells that are floating around in my blood stream and setting up shop in my bone marrow. The drugs were Vincristine and Daunorubicin. They gave me some lethargy and nausea but nothing a little extra sleep and Zofran couldn't handle. I've been getting Vincristine once a month as part of my maintenance schedule, so I'm used to dealing with the side-effects of that one. Daunorubicin I haven't gotten since my first induction round 3 years ago. It's a pretty freaky looking red one, that I didn't look at as it titrated into my body. Luckily I had Monday Night Football and the Atlanta Falcons to keep me occupied. I'm also doing a couple days of high-dose cortical steroids, dexamethasone, which does all kinds of weird stuff to the body. So far side-effects have been manageable (insomnia, muscle wasting, OCD-like tendencies), and I'm only taking two-day pu...

This morning I finished my first round of using my new port, the Ommaya reservoir. I went in each morning this week to receive chemo through the port. It's hard to describe the feeling when the physician sucks out some spinal fluid from my brain and then puts in some chemo, but it feels weird, and does give me a sensation that my head is spinning. It's not too bad though, and the whole thing goes rather quickly: clean, poke, suck, inject, flush, done.  When the doc flushes the line with saline, some people feel like champagne is rushing through their brain (they hear bubbles, and feel some version of tipsy too). I don't get the bubble sensation, which is fine by me, although I still get a bit tispy/nauseous. Luckily, the zofran anti-nausea works well. I take some before my appointment and I'm able to feel OK the rest of the day.  I didn't take any zofran the first day, and it was rough. I feel the best in the mornings, when the chemo has had longer to dissipate.  I ...

The doc placed the Ommaya port on Tuesday morning as planned and all went well during and post surgery. I feel relieved to have gotten in in and now I can start on the next section of section of treatment which will begin next week.  The highlight was getting the port in, but also being able to stay in the nicest section of the hospital, the 8SA leukemia wing where the rooms feel like posh-hotel room. They have some space to walk around, a rolly La-Z-Boy-type chair, and a few other pieces of furniture. The lowlight was the crappy feeling of waking up from general anesthesia. After two days in the hospital, I am now back at home in the apartment.   I'll be laying low for a couple days letting myself heal and watching the first rounds of the US Open. Back at the apt.

My neurosurgery is scheduled for early Tuesday, Sept. 1.  It was delayed 1.5 weeks because my platelet counts weren't high enough.  Hopefully, they'll be high enough next week and I can get this port! Also hopefully I won't have to sit in pre-op for twelve hours hours like I did last week. It was one of the more interesting places to hang, as everybody is a lil' nervous, and all kinds of people are in there together with huge scales in the severity of their situations. Some are grateful just to be there, as they get another chance to fight stage 4 cancer, while others are giving the nurses flack for lecturing them on how they need to stop drinking energy drinks all day after their 2nd heart surgery. Hopefully, I'll be in and out, and then recovering the rest of the day! As for the weekend, I'm laying low and catching back up on sleep from the dose of steroids I got this week.  Bree's family is coming through and we're gonna spend some time with t...

Hello Friends and Family, I'll get a little background going here and then a few details of the new diagnosis with a general plan for treatment.  I was feeling great, with no symptoms. I was working this summer as a plant restorationist after finishing my first year of graduate school in Environmental Horticulture (for me which translates to plant restoration in natural areas). Briana and I got engaged at the end of July! A major life-highlight! And then we headed down to Lake Tahoe for vacay with the Lovells and then came back for a 3-night backpacking trip with the Buchners in the Cascades. A week later, I found out that a surveillance scan showed that my leukemia was back some how.  I did not expect this news. Every few months for the last 1.5 years, my oncologist injects chemo into my spinal chord to treat any leukemia cells that might have hid out and were missed during the first treatment.  They also take out some fluid to scan for bad cells. Unfortunate...