And Then I Got Cancer

Sarah will have a military burial at the Ft. Logan Cemetery in Denver on Monday, May 21st, at 1:00 pm. Her obituary can be found at the All Veterans web site at: https://www.allveterans.com/obituaries/sarah-elizabeth-lobser/ but it is also repeated below: As the sun sets it rises beyond the horizon. Sarah Elizabeth Lobser passed away peacefully in the evening of April 26, 2018 at the age of 38 years. She was surrounded by friends, family, and loved ones after a multi-day celebration with many happy moments. Her sense of humor shone through to the very end, and her life and spirit will continue to be an inspiration. Sarah gave us the gift of bringing all of us together. Sarah is survived by her parents, Monica and Greg, and her brothers, David and Daniel. Military services to celebrate her life are scheduled at Ft. Logan Cemetery on Monday, May 21st at 1:00 p.m.  Sarah graduated from Smith College in 2001 with a Bachelors in Mathematics. She gradu...

This is a link to a shared photo gallery, please add your own! https://photos.app.goo.gl/9VvG4uLed9lvU6o62 Sarah Lobser passed away peacefully in the evening surrounded by friends and loved ones after a multi-day celebration with many happy moments. Her sense of humor shone through to the very end and her life and spirit will continue to be an inspiration. Sarah gave us the gift of bringing all of us together. All of your comments on this blog kept her spirits up through this long, difficult time. If you are so inclined to help others in need, please sign up to be a bone marrow donor or donate to the Leukemia and Lymphoma Society and of course, add your photos to the shared gallery. Much Love, The Lobsers

Dear Friends - We are deeply saddened that Sarah has entered the ending chapter of her battle with this horrific cancer. The medical experts expect only days left to live. It would really lift her spirits to read about memories you've shared with her and any other comments that you would like to offer. We look forward to hearing from you very soon, and we will read all comments out loud to her. Sarah is doing her best to be her usual spirited self in spite of these difficult times. We are grateful for everyone who has been a part of her remarkable life. Sarah's Mom and Dad

I don't know why it's taken me so long to update my blog. I got this idea that people were saying so many nice things about it, I started feeling the pressure of making every post perfect and heartfelt and humorous. So, in order not to be affected by these particular feelings, I figured I'd commit to making this post really sucky. A lot has happened since the beginning of January, so I'm just going to give you the nutshell(s). Last time I wrote, I was participating in a clinical trial at the Sarah Cannon Blood Cancer Institute. Well, it didn't work. There were only three people in my cohort, and I was the only one for whom the drug didn't work. So that was pretty disappointing. The only good thing about this trial was the lack of side effects. Except for a lack of appetite, which sort of ruined my birthday. My parents were determined to take Brent and I out to a nice restaurant, but I was so exhausted and so not in the mood for food that we ended up ordering ...

Today is day 4 of my first, and hopefully last, clinical trial. It's the first day I haven't had an appointment at the Sarah Cannon Colorado Blood Cancer Institute. I think it might be good luck that the institute and I share the same first name. CBCI is attached to Presbyterian St. Luke's, just a stone's throw from Denver's city park, where you would find the zoo and the museum of nature and science. Brent and I keep saying we'll go to the planetarium one of these days before or after one of my appointments, but it hasn't happened yet. The first day of the trial was long, over 12 hours. It started with an icy drive in, followed by a few unsuccessful attempts to draw my blood before resorting to another picc line. I then met with Dr. Maris, who gave me news I should have been expecting. The results of my testing from the previous week were in, and they didn't look awesome. My bone marrow biopsy showed that the leukemia was back up to 30%. Since my las...

I hope you all had a lovely New Year's celebration. Not a lot happened round my way, but David spiced things up by participating in the Polar Plunge at the Boulder Reservoir. I don't know who started this trend of running into freezing cold water to ring in the new year, but I'm not surprised. People will stand in line and pay lots of money to do all kinds of weird things. Brent and David and I all went to the plunge on New Year's Day. There was a decent crowd gathered, with a warming tent where beer and pizza were being served. The crowd was divided into teams and individuals, and each entered the water in order of money raised for the cause (the cause being the American Cancer Society). Some of the teams wore matching outfits, like the guys in the speedos and bowties. The time came for the plungers to get in the water, and for the most part this involved bodies running full tilt into the water, flailing and splashing, sometimes high-fiving the rescue swimmers, then...

I miss laughing. I've had a pain in my diaphragm or ribs, I don't know which, for weeks that gives me trouble every time I laugh, yawn, cough, cry, or vomit. This pain wasn't the only reason I haven't written in so long, but I think it was a contributor. To catch you up on what has happened since my last post: I went home from the hospital feeling weak for some number of days, then started having this pain that sent me back to the ED (no one in the know calls it the ER anymore, it's the "Emergency Department"). It seemed for a while that the pain was related to my gallbladder or lung, and I stayed in the hospital for maybe another week waiting to find out what was wrong with me. Someone had done the math and figured out that I had already spent just about 100 days in the hospital since my diagnosis. I'd like to think it was exactly on day 100 that I couldn't take it anymore. On day 100 or thereabouts I woke up watching the clock and telling all ...

I think I get to go home today. I say I "think" because most of the medical teams have thought I'd be able to. I don't have the final word yet, though                                                                                                                                . I'm quite a bit weaker this time than the time I was discharged. It's taking me a whole lot longer to write this post, because I keep making spelling and grammar errors, and going back and correcting them. I don't know if that's a function of my brain or my small motor skills, but either way it's a pain in the butt. On the up-side, my iPhone recognizes my thumb print again. I don't know how chemo...

I haven't written much lately, I know. I've mostly been in pain or tired. This round of chemo has taken much more of a toll on me, and the things I used take for granted before have become major points of consternation. Some time around my last post I asked Brent to bring a ball to kick around at the park. It was a really windy day, which I didn't realize till I got outside, and we had a hard time getting that ball back and forth to each other even in a small area. I felt good that day, though. I felt like I was getting exercise and staying strong and so forth. It was one of those perfect fall cancer days. I can't quite remember when the shift happened. The teams of doctors round on me every morning when I'm still half asleep. Mostly they talk about my fevers and the status of my various infections and how well or if my cells counts are improving. But at some point the Nephrologists got pulled into the mix. I felt awful and weak all the time. Sometimes I had to a...

Figure 1. The last time I wore a suit My Sister said she wasn’t updating her blog because there was nothing funny to write about, so I offered to fill in for her. I am not nearly as good a writer so please forgive me, I just thought it would be worth giving her many fans an update. Imagine that your body is expanding like a balloon and the hurt is coming from so many different places at once there is no non-hurt to compare it to - hurt is the state of the world, without boundaries. Imagine that nausea has been going on for so long there is no longer a concept of non-nausea. Imagine a grey sea of pinging bells, poking needles, concerned whispering visitors, cautiously optimistic news every day until cautious optimism is indistinguishable from the relentless pain and nausea.   Not every single moment is like this of course - just most of the moments.   Sarah’s white blood cell count is coming back up again after hovering at 0 for a couple weeks, when sh...

I haven't written in a while. I've been feeling pretty terrible. A few things happened at about the same time that left me mostly confined to my bed. My hemorrhoid came back, and then it clotted. It was excruciating, and I started taking Percocet. I stopped getting out of bed except to use the bathroom because it was too painful to walk. Maybe that's why I didn't notice that I had a new infection in my blood. Some sort of resistant klebsiella bacteria. The infectious disease team seemed kind of excited that they had to order in the antibiotics from somewhere else because it had only been approved this year and they hadn't had a chance to use it yet. I would tell you the name but it's really long and I can't pronounce or even spell it. Then they got really excited when they said that if this bacteria mutates again, they'll have to use an antibiotic that was only approved two weeks ago and hasn't yet been used in the state of Colorado, or probably at ...

I know some people dread blood draws, but I have never had a problem with needles. But things have changed. Every day that I'm in the hospital, I have someone taking blood from my arm at least once a day. With a central line, it's not a problem at all. But once I get a blood infection, that central line comes out. And getting blood out of my arms becomes a problem. Maybe because my blood volume is lower my veins are smaller. Maybe because I've been stuck so many times my veins are scarred and it's harder to get into them. Maybe with all the drugs going through my veins they are more irritable. But whatever it is, my body doesn't like letting go of blood, and getting that sample every day is a challenge. I have one peripheral line in now, and everyone (including me) prefers that blood is drawn from there so I don't have to get stuck. Yesterday Matt from the IV team came in and worked his magic, using a heat pack, massaging the entry point, pulling on the line to...

I first came to this hospital on August 21st, the day of the eclipse. I thought it was just my luck that I had to get cancer and be admitted to the hospital during the most exciting celestial event visible to the (well protected) naked eye of my adult life. But Mom and Brent and I at least managed to get out to the parking lot for a few minutes to enjoy the goings on. We didn't have eclipse glasses, but a woman offered to share hers with us. Her name was Elizabeth, and she was a psychologist at the hospital. She and Mom got to talking, and told her about her service dog, Waffle, who would do the rounds with patients. I met Waffle later that day. Elizabeth brought her to my room as I was getting settled in. She was a Lab / Golden Retriever mix. She sat at my feet and let me pet her, and reminded me that I wouldn't get to see my own dog for quite a while. They left me with a card that had Waffle's service portrait on the front and a short bio on the back. It reads "Wa...

Seeing as how it's Halloween, I feel obliged to tell you all the scary things that happened in the past 24 hours or so. Yesterday morning, I heard a commotion down the hall, followed by a horde of what seemed to be zombies wandering through the halls. They weren't actually zombies of course. It was a bunch of people with bleach wipes bleaching down the whole unit. Sort of. I don't know what kind of training they got, but they seemed to be bleaching sort of random things. Random sections of walls, the arm rests of one chair but not another. One guy who came through my room did have a lot of trouble walking, so he really did remind me of a zombie. I wonder how he got stuck with this job. Apparently, the nursing staff have been complaining for a while about the poor housekeeping, and a number of people (including me) have gotten c. diff while staying here. I tested positive again a few days ago after having diarrhea every time I sat down over a hole. I'm back on vancomy...

I was wrong about the Filgrastim. I thought, and I think the Medicine team thought, that I was getting Filgrastim to prevent me from becoming too neutropenic. But the intention was really the opposite. The chemo kills cells when they're dividing. Filgrastim makes cells divide faster, increasing the odds that the chemo will work on them. So hopefully more of the leukemia cells will die off. But more of the Sarah cells will also die off. The strategy seems to be working, because my WBC is dropping fast. I came in with a WBC of about 4, which is normal. After one shot of Filgrastim, it jumped up to 19. Yesterday, after four days of chemo, it was down to 1.6. And today I'm at 0.1. I started feeling pretty crappy early on this round. By Wednesday evening I had no appetite. Mom and Dad and David went out to dinner and brought me back some soup and pie. I could tell it was good, but I could only take a few bites. Yesterday I didn't feel like going on my usual morning walk. I ...

It almost feels like I never left. After a week at UC Health, and a glorious ten days at home, I'm back at the VA for take three of chemo. I'm at the point where I feel almost recovered from the last two rounds. I can walk at a fairly normal pace, I can climb stairs without feeling (abnormally) out of breath, and my guts aren't constantly in a twist. I even had a beer with coworkers on Friday. It was really nice to see everyone, and I was pretty much my old self. So it seems a shame to put more poison in my body and fall back into the sick zone. I know in about a week I'll be feeling pretty shitty, so I don't know what kind of Halloween costume I'll be able to pull off. Any suggestions? This round of chemo is called GCLAM: three days of Mitoxantrone, and five days of Cytarabine and Cladribine. I also get shots of Filgrastim to stimulate my bone marrow to produce more white blood cells. Hopefully this will help lessen the blow of the other drugs, my cell count...

I normally ignore calls from numbers I don't recognize. But the other day I got a call from a number with a Seattle area code. I'm glad I picked up, because it was the coordinator from the bone marrow transplant center there. My doctors here had just requested an urgent search for a stem cell donor for me, and the coordinator, Lisa, was calling with information about the donor search. Everyone keeps asking me what the donor search process is like. And every time I get a question from someone, I wish I knew more about it. Like why does it take so long? I mean, if there is a database out there with a bunch of donors, and there's a search algorithm, you should just be able to plug in your information and know instantly if there's a match, right? Well kind of, yeah. Lisa told me she could plug in my HLA information to the system and know right away how many matches I had in the registry. I asked her how long the whole process of finding a donor takes. She said if you h...

When I left the hospital a week ago, I left under the impression that I was in remission. The folks at University hospital didn't see any trace of leukemia in my fourth bone marrow biopsy. And they said that made sense; FLAG-IDA can take a little longer to show its effects. So I went to my parents' house for a few days, got some home cooking, hung out with Pisco, and enjoyed long stretches of sleep and not being connected to an IV pole. On Saturday I went home home, to the house I bought last year. At that point I was ready to enjoy making breakfast for myself and Brent, taking Pisco for walks, and even doing some housework. I could tell I had been languishing in the hospital when vacuuming made me sore. I also have a really hard time opening any kind of bottle or jar. Good thing I have my man hands within shouting distance at all times. I've had a number of appointments back at the VA since I left. I had to finish a round of IV antibiotics, and I went back again today...

Out of the hospital, that is. That's one of the ways being in the hospital is like being in the military. Things are either happening very fast or very slow. There doesn't seem to be anything in between. I had stopped paying attention to my cell counts when I went a couple days without needing a transfusion. Also when I had a longer list of things that annoyed me at University hospital. But every day Dr. Smith, the attending on the bone marrow transplant team, came to see me, he would tell me I looked "too healthy to have leukemia." He was the first to express doubt about my biopsy results that sent me to the University in the first place. So when he came in to tell me the latest results were showing that I was actually in remission, he followed that up with asking if I wanted to go home. Heck yeah I wanted to go home. Not be woken up at 2am? And again at 4am? Not have to call someone to ask for a gown so I can cover myself before going for a walk? Not be constan...

I'm in remission. I think. They think. I think I mentioned that the doctors here at University hospital repeated the last bone marrow biopsy I got, the 14 day biopsy after the FLAG-IDA chemo. I think that was last Wednesday. Most of the results are in from that biopsy, and it shows no signs of leukemia cells. Which is puzzling, since the biopsy I had less than a week before showed I was still at 10 percent. Apparently, especially with FLAG-IDA, the chemo can have a kind of delayed effect. So even though the chemo had done its work and was out of my system, the leukemia cells took a while to actually die off. This is great news. But, I don't want to get too excited yet. The next thing that happens is ANOTHER BONE MARROW BIOPSY. They want to do it tomorrow. This would count as the 28-day biopsy. They also called it something like a recovery biopsy. It's the one they do when cell counts have recovered and you can look at the bone marrow to see what's growing back. If ...