neutropenic fever

I finished my last round of chemo two Fridays ago, and I expected to start feeling back to normal fairly soon last week as has been my previous experience.  However, I didn't feel better and instead starting having this weird tightness in my left chest.  Van Tine sent me in for an X-ray followed up by a CT.  I met with him on Wednesday about the results and looked like I had some kind of infection.  I was mostly feeling ok so he gave me some antibiotics.  I spent most of the rest of the day napping in lab since we had lab meeting that afternoon for the first time in over a month and I was already on campus.  I was feeling kinda off and warm after I got home which lead to me taking my temp to discover I was at 101.7.  After talking to Van Tine, going to the Cancer Care Clinic, and getting a blood count taken; I was admitted with nuetrapenic fever.

Nuetrapenic fever is the medical way of saying I didn't have any of a certain type of white blood cell with a fever on top.  There are many potential causes to this condition, but mine was almost certainly chemo.  The docs admitted me since not having any white blood cells makes you extremely susceptible to infection.  This is why I was started on high doses of very broad spectrum antibiotics and put in isolation.  Although this is a fairly scary condition to be in, Van Tine was happy to hear it since it meant all the tiny nodules he saw on my lung really was an infection and not my cancer going bonkers.  

I have essentially been in the same condition since with a few exceptions.  My left chest pain is mostly gone, but I quickly lost whatever appetite I gained over the weekend and started vomiting regularly.  The frequent nausea has kept be in bed most of the time especially since exhorting myself is often the instigator behind vomiting.  Just the walk to the bathroom and back made me out of breath.  This has improved quite a bit in the last couple of days after I've received a few units of red blood cells and platelets which I was low on too.  My body temperature has been a daily roller coaster of ups and downs which hasn't helped either.

I haven't been bored much since I've been here.  I've had lots of friends come by and visit.  Many a nap has been taken to make up for fever induced sleepless nights and getting woken up by nurses to take vitals.  A mix of random cable TV movies, shows, and some reading has filled up the rest of my time.  The food has been a mix ranging from pretty good to terrible.  It has been a learning experience.

I saw Van Tine today with good news.  He said my blood counts were climbing and if things went well I would be out on Tuesday.  I would need to keep my temp at normal and have my white blood counts keep rising for this to happen.  Otherwise, they would assume the stream of antibiotics I've been getting haven't been effective and they would start some new tests to figure out what kind of infection I have.  Van Tine said it was pneumonia when I was first admitted on Wednesday, but after reading Wikipedia it appears pneumonia is the generic term for lung infection.  Hopefully it gets cleared up before we'd have to worry about that. 

Chemo Attempt Number 2

As you might have seen on Facebook, the docs decided from my scans that more chemo is the next best step.  This is because my progress through radiation had both good and bad consequences.  The good is my primary chest tumor shrank considerably and will likely continue to do so as a result of radiation's continuing effects.  The bad news is the cancer advanced in the fissure between the two lower lobes of my right lung and the metastasis tumors in my pelvis that appeared to be gone in the previous PET have returned.  Van Tine is optimistic that the new cocktail of chemo drugs will be effective, which we will determine in 6 weeks with a fresh set of scans following 2 rounds of week long treatment.  If it appears to be doing the trick, I'll donate my bone marrow into storage and get a high dose chemo regimen which will kill off hopefully a great deal of cancer but take my remaining bone marrow and immune system with it.  After the chemo wears off, I'll get my stored marrow transplanted back into me.  The kicker is I'll be stuck in the hospital for a month or so during this process if it all happens as planned.  Plans never seem to reach completion (currently on plan 3.5) since I've started this journey in March, so who knows what will actually happen.

So far I've had 3 days of the new chemo this week with two more to go.  I started having some nausea and dry heaving today which was great on top of the return of chemo taste and what feels like a sinus headache.  One nice thing about the new chemo drugs is that it only takes three hours instead of six to pump them into me.  I've also been able to sleep through two out of three treatments which has helped speed things along.  Being back in treatment has also eliminated the severe hip pain I was having last week..  The docs told me to double down on the pain meds at night since it was the nights and mornings that were the worst with the pain subsiding during the day.  That greatly helped in combo with remembering to take my Ambien.  However, the relief caused by chemo with the assistance of IV steroids really did the trick to eliminate my limp.  Actually it's probably the other way around since roids work much quicker than the chemo, but I can pretend that the regrown pelvic tumors causing such pain have retreated a little due to treatment.  

In other news, lab work continues in a broken, piecemeal, and forever behind manner.  It's hard to accomplish much when you're trying to work half the morning and half the afternoon with chemo induced confusion and forgetfulness screwing with you.  But it does appear that I need to organize my messy batch of data into something intelligible to show my boss when he gets back from Colorado.  I managed to get out of a meeting halfway through it last week by throwing up into not one but two different lab trash cans.  Not the most pleasant way to bail, but very effective.  I did make him very happy when I was accepted to the Cancer Biology Pathway here.  WashU has various of these programs, and during it I'll take a couple of classes about cancer while shadowing some of the cancer docs as they treat patients and such.  A cancer patient observing doctors treating cancer patients.  It'll be like looking into some kind of twilight zone looking glass.  And one of the reasons my boss is happy is that he won't have to pay my salary for another two years.

Also, a car load of my high school friends are driving down this weekend to see how I'm doing and check out St. Louis.  It should be a lot of fun taking them around and hearing some new stories.  One of the silver linings of cancer has been getting caught up with friends I haven't seen in awhile and really understanding how many people I am connected to both directly and indirectly.  It's definitely been interesting.

First publication, first hospital admission

Today has been an unusual day.  I started out with a PET scan at 7:30 this morning with a 11:30 CT scan following.  The combination of heading in much earlier than usual and no breakfast (because of the scans) threw me off a little from the start.  I've been having increased pelvic pain in the mornings which wasn't helping things either.  The PET went fairly quickly with the anticipated hour wait time in between the radioactive glucose injection and the actual scan being taken up with an episode of Breaking Bad.  The wait for the CT was long and unexpected, but I got a number of cat naps in.  About 30 mins after the scan I got a call from Van Tine's nurse saying the radiologist saw that I have an obstructed small bowel and that I need to be admitted.  Turns out it wasn't an emergency by any stretch since I was told to come back around 5pm to check in and the only treatment I've gotten so far (9pm) is a fluid drip.

I appear to be an unusual case of obstructed bowel since I'm not hunched over in pain and abdominal cramps.  I feel fine for the most part, but my appetite and regularity has been hit and miss lately.  The plan seems to be observation over night with another CT in the morning to see if the obstruction is still there.  I emailed Van Tine to see what he thought and he is confident that 'conservative treatment will cause the obstruction to regress'.  I guess we'll wait and see what happens.

A glimmer of excitement brightened my day when we got an email from one of our collaborators that the paper I worked on got accepted to the journal Cell.  The work that I contributed to the paper was a side project which turned out to have novel results which complemented the work that this other group was putting together.  They were way ahead of us data and results wise, so it made sense to combine efforts than try to get separate papers.  Several months and only one revision proved that it was very mutually beneficial arrangement.  Luck was definitely on my side on this one.  Hopefully my primary project will pan out too, but it's going to take a lot more work before that potential publication sees the light of day.

Feeling pretty good

I just got done with my last day of radiation, and it feels pretty good to be done with another leg of my treatment.  It took about 7 weeks to get through at around an hour a day for 5 days a week.  Periodic nausea, increased fatigue, a sore throat for the past three weeks, and what is currently looking like a bad sunburn on my back were the worst parts of radiation.  I was able to work almost full time hours during the whole way, so it was a very manageable part of my treatment so far.  The nausea and lack of appetite appears to be clearing up already over the weekend, and I am hopeful that the sore throat/burnt back heal up shortly as well.  Fatigue is still sticking around, but I managed to drive back and forth to Des Moines over the weekend without much of a problem.  Nor did it prevent me from meeting up with several of my friends and help celebrate my niece's first birthday.  I fell asleep during the present opening, but I don't think she noticed.  The drive home seemed to go by faster than the way up, and a mix of coffee, iced tea, and loud music pulled me through in the last half hour to make it home last night.  

I have CT and PET scans lined up in one week.  I'll meet with Van Tine the following Thursday to hear what the docs have decided is next up.  I'll be using this week to relax, get some work done, and not worry about what this will entail.  It'll be the first week in a long time without having to go to the hospital for anything, and I plan on enjoying it.

I also put up some pictures that I've been putting off.  There is one of my lab from before starting chemo.  I can't thank them enough for all the support they have given me.  One of Anna and I at the Yazoo brewery in Nashville about two weeks into radiation and the low point of my hair content.  One of my parents and sister Amy when they came down to visit a few weeks ago.  The last was last week at the Cardinals game with the triumphant return of my hair.

Pictures: Hair there, gone, returning, and back

Restless

It's 6:30 on Sunday morning, and I've been awake and restless since 4.  Spent the first hour shifting from the bed, to the recliner, to the couch; trying to find an accommodating space where I can fall asleep without switching every other minute to being too hot to too cold.  But this is great compared to where I was before I started treatment.  My back pain is very well managed by the right amount of drugs which used to the the overriding reason for not being able to sleep.  And it's only been happening off and on instead of almost every night.  The month I spent sleeping on Anna's couch since it was the only place I could find some relief wasn't that long ago.  Plus Shradha gave me her Showtime password for my graciously given iPad which meant an hour of this morning was spent watching Josh Blue's hilarious standup.  I highly recommend it.  Especially to my brother in law Jared.  It's your kind of humor and you have the potential for the same kind of scruffy homeless look.  All the same, last night still sucked.

Almost puked already this morning too.  I just drank an unappetizing ensure to keep my weight up so I made sure to swallow it back down quick since I wasn't a out to waste both the time and money spent swallowing that expensive crap down.  The steroids don't seem to be holding their magic the last few days, which a small group of onlookers noticed as I walked over to the baseball game last night.  I've now gotten used to it so it was a quick mouth rinse, a piece of gum, and I was good to go.  At least I didn't lose it in the bleachers like I was worried about.  Wish the game itself had that much excitement.  Most of the scoring happened before we got there (far to hot to show up on time), and the Cards ended up losing.

In other news, I have little more than a week left of radiation.  After that I'll have the usual round of scans and doctor pow-wows to see what will happen with me next.  I just talked to my radiation oncologist on Friday, and he said that my tumor is continuing to shrink.  He said the full effect can't be seen for up to three months, but I'll have moved on to my next treatment step long before then.  Just remains to be seen what that will be. 

Rock beats scissors, steroids beats nausea

The past week was fairly uncomfortable.  I had a five day or so stretch of nausea and vomiting after most meals.  Not having an appetite in addition made trying to eat a challenge and at times painful.  I almost forgot to mention my radiation induced sore throat that burns all the way down with every other swallow.  Needless to say, I lost a few pounds. 

Monday was the breaking point where the first thing I did was throw up before even attempting to eat breakfast.  The anti-nausea meds definitely were not working, including the new and supposedly more powerful kind they put me on Friday.  My regular radiation oncologist was out of town, but I was able to see one of the residents.  I am very happy with how it worked out.  His questions and examination was brief and to the point.  Then he recommended starting me back on dexamethosone (a steroid) that I get put on with every round of chemo and with my increased back pain before starting radiation.  My nausea also started at the same time that I stopped taking it for said pain, so I had a strong feeling that it would work to stop it.

Sure enough, I've been taking steroids for the past two days, and I have been feeling back to normal.  Unfortunately the docs say steroids have a bunch of negative side effects (shocking) so they don't want me to be on them for very long.  Hopefully, whatever is the real cause of the nausea will be gone by the time I go off them again.  The docs don't think it's the radiation, but I'm not overly concerned as long as the dex keeps doing its job.

I only have 8 more days of radiation left.  After that I will have another set of scans to see how well the treatments worked, and my team of doctors will pow-wow to see what they want to do next.  I'm hoping for surgery for a few reasons.  First of all, I just want together it over with.  Surgery has been hanging over my head since they first found my chest tumor, and I've had several potential dates come and go as it is.  Secondly, I want this shit out of my body.  Third, I want to start the recovery process after they potentially take out several bones and a solid chunk of lung so I can get back to doing the things I love like biking, climbing, etc.  Those things are probably a long ways off still with chemo still on the schedule, but I wouldn't have to worry about breaking my cancerous and more fragile bones.  Chemo is going to happen no matter what with treatments stretching into next summer.  I'll keep you all informed on what they decide.