Lovebuch family happenings

My doctor and I decided to cancel any more systemic treatment because of the increasing occurrence of complications. My doctor felt that at this point, the cons outweighed the pros--meaning the organ damage and possibility of more serious complications caused by the chemo would be greater than the increase in the chance of cure.  I sided with his judgement. I have mixed emotions because I want the greatest chance of cure possible which means sticking to the plan as closely as possible and taking more chemo. However, this must be balanced against the side-effects, and there is a limit to how much chemo any body can handle.  My pancreas, stomach, and intestines were being pushed hard. These are organs I don't want too max to their limits. (Especially the pancreas which Dr. Shustov described as a nuclear reactor of enzymes--so I really want to avoid messing with that one anymore). It really makes the most sense to stop now, before any worse complications occur. We discussed stopping

Since leaving the hospital 3 weeks ago, I haven't had any more chemo, as I'm still recovering from the side-effects of the cytarabine almost a month ago.  The cytarabine isn't selective in what cells it kills and it really inflamed my GI tract. Five days after getting out of the hospital, I went back in the middle of night because of an esophageal bleeding.  It scared the bejesus out of me as I had low platelets (also from the cytarabine), so once the bleeding started, it took a while to stop, my stomach filled with blood, and then that caused a load of nausea until I vommed up a bunch of fresh blood. Bree drove me to the ER and we stayed in the ER for 15 hours until a room opened up on in Heme/Onc. Twenty-three people visited us during the ER stint--6 doctors, 7 nurses, one PA, 4 radiology, PT, OT, and 3 hospital staff to sign forms. I was glad for the attention, but it did make it difficult to sleep. After some tests and a scope into the stomach, I was free to go on Satur

hello all, Briana reporting in for blogging duty. It has been a long 9 days in our world. Derek checked in to the UW hospital last thursday for regularly scheduled dose of cyterabine (the "marrow-crusher") that Derek has previously described. All went as planned in that stay and Derek was released on Saturday. Battling some nausea, we managed to make it out to the wedding of Jeff and Kaitlan, two very good family friends of the Buchner Huhman family. However starting in the middle of Saturday night, D started having extreme stomach pain. Eventually it became clear that we would need to go the hospital as meds on hand weren't helping. So we checked in to the ER, and long story short have been here ever since (well, I have come and gone quite a bit, but Derek has not). It seems like one thing always leads to another with this type of treatment - the chemo drugs cause a whole host of side effects, which all have their own potential rippling effects. So my understanding is

We checked the counts on Monday (yesterday) and I seem to be on the up-swing for platelets and white counts, but, oh so slowly. I'm still neutropenic and still below 20k platelets, but my counts are higher than I was most of last week. Now I'm at my nadir for red cells. This is typical they tell me, and red cells are the last to go and last to return. It does explain why I've been feeling more fatigued than normal, and why my apartment is all the sudden at 13,000 feet. I get winded going up the stairs in the building, and I take a few extra breaths every time I stand-up from my chair or couch. The team is intrigued why it's taken so long for my counts to recover, which reminded me of a common theme with blood oncology: how your bone-marrow responds to chemo is unique for each person and doesn't care about your mental or physical shape. It's tough not to take it personally, but the drugs affect people differently, and there is nothing you can do about it. It seem

I've spent this week mostly at the Seattle Cancer Care Alliance clinic getting platelets, getting bone-marrow-stimulating shots, checking blood counts, and getting the daily chemo through the Ommaya. I even forgot about the Peg-L-asparaginase on Monday. Luckily, no side-effects to report from the Peg-L. My blood counts plummeted as predicted from the cytarabine, pushing me into the neutropenic zone (sub-500 neutrophils) for the first time a few years, and also lowering my platelets. But we were able to keep the platelet count safe with the combination of infusions and the growth factor. We're also trying IVIG (intravenous immunoglobulin) therapy to see if it will raise my platelet count. IVIG is pretty cool in that it's a bag of pooled anti-bodies taken from the plasma of thousands of donors. IVIG is used to give some people makeshift "immune systems", who can't make their own antibodies, but its also used to calm down auto-immune disorders like my platelet au

I started consolidation on Monday of this week. I had an appointment with Dr. Shustov to check blood counts and talk about the upcoming chemo.  Cytarabine is the only chemo in the regimine that happens in-patient, so I knew I would be going into the medical center later. But, to my surprise, I learned that the stay would be Mon-Wed, not Mon-Tues like the schedule had indicated. So goes things in the healthcare world, little surprises seem to pop-up all the time no matter how diligent I try to be in clarifying and asking questions. Cytarabine is cool in that the working mechanism in the drug was found from nature: a species of sponge in coral reefs. Its now synthesized, but the sponge they found produced a cytosine base that combine with deoxyribose to produce something similar to DNA, but not exactly DNA. If you infuse that cytosine base to humans, dividing cells will uptake it thinking its the base to make DNA, and create cells that have this altered DNA, which kills the cells. Since

Started the week off with bone-marrow chemo on Monday. The same as the last two weeks: Daunorubicin, Vincristine, Dexamethasone. The team decided to do a half-dose on the Vincristine since the neuropathy improved in the hands, but it was still rather recent since the last full dose. It only takes 30 minutes to infuse the chemo, which is nice, and I'm used to the side-effects on these ones now, so anxiety is low in the infusion room. An interesting part of undergoing therapy, which I remember noticing three years ago, is the transition from fearful to comfortable with infusions.   Before the first round of a new drug, I would have a chat with the chemo pharmacist and usually leave feeling rather anxious since they pass over an info list with a huge list of possible complications and it's only human nature to zero-in on the rare occurrences. After gaining information from the doctor and the nurses, I would feel more at-ease, but since the human body is so complicated and each per

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. Unfortunately, the ro