B is the word.

June 26, 2010

C Word

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As predicted, I did leave the hospital Saturday June 19.  I’ve now been home for a week.  It’s Day 31, so I’m through my first month after transplant.

We’re going to the clinic twice  a week for the usual blood-draw plus followup with the transplant team.  My blood numbers across the board (red, white, neutro, platelets) are approaching the low end of normal.  I suppose my energy level and appetite are doing the same.  I am still on IV antibiotics, administered at home.  It’s a cool system:

My pal vanco

There is apparently air pressure in the bottle that squeezes the balloon with the vancomycin solution in it, causing it to flow when the line is uncapped.  It’s remarkably well-regulated:  it’s supposed to take 2 hours and it does.  I can keep the bottle in my pocket and wander around more or less normally.  I’m doing so right now.

So here I am at home getting better, slowly.  I am still bald, eyebrowless, eyelashless, and there is no sign of regrowth yet.  This is not a big problem but it’s rather symbolic of still being a Cancer Patient.  I think having a bald head makes it harder to regulate my body temperature too, i.e. I get cold and hot more easily.

  • Me:  Doc, how long until my hair starts growing back?
    Doc:  Two to three months.

Perhaps the most annoying side effect is in my sense of taste (hey, there are many fans of early Zappa).  I guess the mucositis and palifermin and all that cause the tongue papillae to wear down or lose their oomph or something.  In my case, I can’t taste sweetness at all.  Saltiness is also quite reduced.  Mostly, things taste sour.  The usual experience of loss of taste is actually loss of smell, when one has a cold.  We say “isn’t it remarkable how much of taste sensation when we eat is really smell.”  I am now experiencing the opposite:  I can smell just fine, but I can’t taste.  Let me tell you it’s definitely worse:  most of taste, as it turns out, is taste.  I made a chocolate milk shake, and it tasted mostly sour and bitter.  Maple syrup smells very maple-y, but doesn’t taste sweet.  Same with cantaloupe.  I made a nice loaf of no-knead bread and it tasted … sour.  Feh.  Meaty things seem to taste more like themselves than other stuff; also peanut butter.  This situation makes it hard to get excited about all the eating and drinking I am supposed to be doing to regain my health.

  • Me:  Doc, how long until my sense of taste comes back?
    Doc:  Two to three months.

Despite my almost-normal blood counts, I am still immuno-compromised.  I guess my brand new immune system is still immature.  This means I am on a form of house arrest.  I can’t mix with crowds, so no going to the store for example; I have been the main food shopper for the family, so this is a burden.  No athletic or musical events.  Food has to be well-washed and overcooked, especially meat.  Many kinds of restaurant food are verboten, i.e. anything with fresh vegetables.  (Pizza is OK.)  In the kitchen counters have to be wiped down with bleach solution every couple of days.  I have to have my own special towels in the bathroom.  Everyone entering the house has to disinfect their hands.  On and on.

  • Me:  Doc, how long do we have to do the immuno-compromised regimen?
    Doc:  I think you can figure this one out by now.

As of a few days ago the kids are now on summer break (Seattle schools run late into June).  For now they are engaged in classic summer loafing-about-the-house behavior, enjoying having nothing to do.  I am in pretty much the same boat, but it’s rather less enjoyable when it’s enforced idleness.

Fortunately I have the World Cup for distraction.  Go USA! Uh, go Ghana!

June 19, 2010

C Word

14 comments

As I reported, on Wednesday I went back into the hospital with some bug and was clearly pretty sick.  “I suspect something Gram-negative” said the doc at SCCA, which would not be good.  Cultures were started while broad-range antibiotics were applied.  My temps continued to be high.  “It could be a virus” said the doc at UW, so I was put on contact isolation, meaning that anyone coming into the room had to wear mask, gown, and gloves, and I wasn’t allowed out of the room at all.  This handling is not conducive to feeling healthy and well-connected, let me assure you.

But like magic the antibiotics did the trick.  Within a day my temps were normal and stable, as were the other vital signs.  White counts were revving up.  I got four units of red cells over two days, which always helps. Blood cultures were positive for plain old staph (which is Gram-positive), but only that, so that was deemed to be the problem, and is well-known to be fixed by the antibiotics I’m on (primarily vancomycin, aka “vanco”).  Cultures after the first day have been negative.

With all of that suddenly I’m feeling rather … normal.  The most obvious improvement is in eating, where I had never eaten anything close to a proper meal after coming off the tube feeding over a week ago.  Now I can actually clean my plate, which with hospital food indicates an almost desperate appetite (though I have to say the Thursday night prime rib special was not too bad).  I had come to the hospital with a rather disturbing cough which had started during my previous stay.  That has cleared up too.  My energy level is good, especially when shouting at the TV regarding outrageous officiating mistakes.  I can march about the hallways dragging my rack behind me.

So where did the staph come from?  Was it due to profoundly poor house-cleaning by my caregiver, despite constant wiping of surfaces with bleach solution and nagging everyone to disinfect their hands?  Was it that dodgy deep-fried tofu?  Was it dog poop in the park, or too much exposure to people from Colorado?  None of those, said the docs, these bacteria live on the skin and can get into the blood in any number of ways.  Just one of those things, happens all the time, now that white counts are high it shouldn’t be a problem.  Breath easy, everyone.

It looks like I’ll be going home shortly (this is Day 24).  We’ll have to administer IV antibiotics (more vanco) at home for a few days which will be new but shouldn’t be onerous. There will be daily clinic visits for a while I guess, but with any luck this was the last hospital stay for a long time.  I’ve got pretty good at the hospital routine, but I won’t miss it.

Now begins the long climb up.  While going through all of this I have lost quite a bit of weight, and due to all the lying about it’s clearly mostly loss of muscle.  My poor arms and legs are rather skinny and flabby (though my fingers are strong and nimble due to all the blogging).  I can’t wait to get back on my bike, but will have to settle for the exercise bike for a while.  Lots of walks are in order.  I suspect the New Normal won’t be quite like the Old Normal, but I’ll take it in any case.

Also I have about 10,000 email messages to catch up on.

June 16, 2010

C Word

2 comments

When last we spoke, I was fresh from the hospital and things were looking good.  Counts were going ever upward; eating was more reasonable; energy was returning; the World Cup was starting.  The World Cup continues, but unfortunately my forward progress has not.  As I write this I am back in the hospital dealing with the effects of some sort of bug.

Saturday was a busy day.  My partner in crime and part-time spouse Ken came to visit, with his daughter Sara.  This was very good.  After chatting at the house, we all went for a walk in Ravenna Park, and even brought along the dog (check, check):

Sara held the leash, while Ken (as he is so often) was in charge of the poop bags (since my delicate nature prevents me from dealing with it).  Here are Ken and I wearing our fern wigs:

It was a beautiful sunny afternoon, one of very few this grim month of June in Seattle (aka June-uary).  Our walk was much longer than I thought I could do.  Maybe too much?  Who knows.

Later Saturday our neighbor Robin came by with Vietnamese food and we had a nice adult dinner as a break from her children (she’s a single mother, and a foster parent no less).  I’m sure the food was great but I could eat hardly any of it because it was mostly fresh vegetables and restaurant stuff has to be well-cooked to be safe for me.  This perhaps led me to eat more than I should have of the fried tofu with spicy sauce.  Too much?  Could be.

Sunday was the first medical-free day in forever, which should have been a blessing.  Instead I was exhausted all day.  I figured it was another case of low red cell count (aka hematocrit) since SCCA had suggested on Saturday that I’d need another transfusion at some point.  Then my temperature started drifting upward, not to go-to-hospital-now levels, but near there.  We went to SCCA on our own initiative Monday.  I was surprised that my white/neutrophil counts had gone down a bit since Saturday.  I got two units of red cells, which helped some but not enough.  My temps continued to rise.  Tuesday I got a fancy antibiotic which seemed to help with the fever but unfortunately caused a rash. The docs were prepared to let me go home, but just barely.  I was still very tired all the time.  I even missed a World Cup game.

Today (Wednesday, Day 21) we went to SCCA again.  There was much speculation about the right plan and how to accommodate giving lots of IV antibiotics at home, when all of a sudden I got the shivers, so game over.  The ambulance came and whisked me away to UW Hospital for second time in three weeks.

So here I sit, in the room adjacent to the one where I spent 11 days earlier this month.  I had hoped for a change of scenery, but oh well.  I think I’m starting to feel a little better, but it will be three days minimum before I’m out again.  This means I’ll be watching USA-Slovenia from the hospital, sigh.  Good thing I’m not really attached to Spain, or I might get depressed.

June 11, 2010

C Word

3 comments

No, I haven’t been served legal papers (well, maybe I have, but that’s a whole other blog).  This is the term the docs used today to acknowledge that my neutrophils finally were measured at 610, well above the 500 mark.  So the transplant is considered a success, at least as far as allowing my blood production system to rebound from its obliteration by the radiation and the chemo (myeloablation is the medical term for this).  Whether this whole business is successful at leaving me cancer-free, and treatment-side-effect-free, will of course take the rest of my life to figure out.

We went for a checkin at SCCA today after what seems like a long stretch.  One of the nurses said “hey, last time I saw you you were leaving here in an ambulance.  You look a lot better now!”  Spose I do.  After reviewing everything the team had to agree that I’m doing quite well.  “Your med list is only one page!”  Narly.  I don’t need IV fluids either.  Eve and I were stunned to hear that we’ll only have twice-weekly appointments after this rather than daily.  What will we do with all that time? (Hint.)

It’s all risk management:  My older daughter has been in a fantastic program this year at her high school called Hands For A Bridge.  They had their culminating event this evening, a performance by the 32 students followed by Q&A about their experiences in Northern Ireland, South Africa, and Seattle.  Annika really wanted me to see it.  It seemed fate that I got out of the hospital just in time, but being in a room with 100 people is not exactly what the doctor orders when I am still very vulnerable to infection. The folks at the clinic stopped short of forbidding me to go, though.

After some hand-wringing I decided to go.  I wore a mask and sat by myself in the back of the theater, and managed to ward off any attempts at greetings and hugs (my naturally repellent disposition comes in handy at times).  I’m really glad I went.  Seeing the kids lay it all out after a long and sometimes difficult year was inspirational.  Maybe the next generation will be able to accomplish something after all to make the world a better place.  It certainly could use the help.  I’m very proud of them, especially Annika.  I hope I got home without catching anything.  We’ll see.

June 10, 2010

C Word

14 comments

I arrived home about 7:30 this evening, after 11 days in the hospital.  This is Day 15 post-mojo.  My white count today is 930, neutrophils “400-something”.  The docs agreed that I’m in good shape, my numbers are going up, and I have a good care-giving situation (da best!) so it’s OK for me to go home despite not reaching the magic 500.  I could tell my nurse was skeptical, but hey.  I made it a full 12 hours ahead of deadline …

As I walked in the door dinner was on the table, a delicious chicken stir-fry made by my younger daughter.  Now that’s care-giving.  Check check check on those forward-looking things.  Still lots of getting better to do, but the worst is behind me.  Now to sleep in my own bed.

Our stately home

June 10, 2010

C Word

7 comments

In approximate likely chronological order:

  • Eating solid food (already done, though only if you count hospital food).
  • Not having to spit all the time (also mostly there).
  • Not being constantly attached to my buddy the infusion rack (note TPN in upper left):

  • Not having my output saved and scrutinized.
  • Wearing my own clothes instead of the hospital PJs (why exactly do I need to wear 2XL pants?).
  • Breathing fresh air.
  • Giving the dog a belly rub:

  • Getting something good to drink from my own fridge.
  • Sleeping in my own bed, next to my wife.
  • Enjoying that Seattle sunshine.
  • Going for a walk in Ravenna Park:
  • Taking the dog for a walk.
  • Watching maybe a little sports on my own TV.
  • Enjoying a home-cooked meal with my family.
  • Making a morning caffe latte for Eve, my caregiver.
  • Baking (and eating) some good bread:
  • Riding my exercise bike.
  • Eating pizza.
  • Driving.
  • Making a morning caffe latte for myself.
  • Not having to take so many damn pills.
  • Watching my daughters play soccer:
  • Going to the farmer’s market.
  • Not having a next scheduled appointment at SCCA.
  • Going back in to the office.  What, you don’t like your job? I love my job.
  • Riding my real bike:
  • Eating a properly-cooked steak.
  • Having my eyelashes back.
  • Getting my Hickman catheter out.
  • Combing my hair.
  • Eating a good burrito.
  • Going to a Sounders game (hi Nathan):
  • Having a beer.
  • Traveling by plane, perhaps to see my far-flung colleagues.
  • Finishing that long-delayed backyard wood-fired oven.
  • Eating sushi.
  • Skiing at Silver Star:
  • Living many cancer-free years.

June 9, 2010

C Word, Sports

1 comment

The other day my boss Nathan came by to visit and to deliver some goodies.  One was a nice card from my office colleagues (“hey, bring some that morphine back with you”), though there were some ominous “there will be some things for you to look at when you get back” comments on the card too.  I am mostly not thinking about work, except for doing the occasional conference call …

Nathan also brought:

European Identity Award 2010

This is an award our team at work received from the European Identity Conference.  It’s lucite and about 12 inches tall.  It’s is a little odd to receive it because we are still far from finished with this work, and we’re not even sure we’re really going to use it.  But the award looks nice. And I have to say, it’s rather appropriate, since Nathan has more of a European identity than any other American I know.  8)

The award is perched by the sink next to my medicines and gets lots of oohs and aahs from the hospital staff.  This leads to discussion of the work I do for the UW worrying about how people log in to things, which inevitably leads to complaints about how we make them change their passwords so often.  “Actually that’s UW Medicine IT making you do that, not us”, I say, but it’s all just stupid IT oppression to them.

Lastly Nathan brought by a copy of a 100-page special edition World Cup 2010 review from the Daily Express in the UK.  This is a fascinating read in itself, and also serves as a banner to wave at the docs when they forget my agenda.  From it I have also learned a couple of new Britishisms:

  • “gridiron” to refer to American football.  “The American public may continue to prefer their ‘own’ sports like baseball and gridiron …”  I suppose this is the equivalent of the use of “soccer” in the US to refer to what everyone else calls “football”.  They recognize the term, but would never use it.
  • “tie” meaning “game”.  “Trailing Costa Rica by two points, Honduras needed to win their final tie away to eternal rivals El Salvador.”  Since “draw” is used to refer to a game ending with both sides having the same score (i.e., a tie) I guess this isn’t confusing to them.  Oy.

Or are these just Daily-Express-isms?

June 9, 2010

C Word

Comments Off on Anticipation builds

First, the numbers:  total white count 700, neutrophils 350.  We are poised to push through the tape.  This is Day 14, two weeks since I got my mojo.  Maybe this thing really is going to work.

When the docs visited this morning there was tension in the air.  Could they figure a way to get me home by Thursday?  Could they just assume that my neutrophils would make it close enough to 500 by tomorrow given the trend?  Can they get me off the feedbag by today, figuring that my eating is good enough?  Will an extra shot of antibiotics today be enough to tide me over?  No one said why there needs to be such a push, but everyone knew.

Later the transition nurse came by.  She helps make us make a smooth transition from the hospital back to the transplant team at the clinic.  This is part of the prep for going home.  She said earlier in the day, when discussing my case, the docs had made the point that I really had to be home for the World Cup so they were doing what they could.  Love ya, docs!

This morning out of the blue I called my old Bay Area kayaking buddy Penny since I realized she hadn’t heard about what has been going on.  She’s a scientist (like Eve) so she took a detailed interest in my story.  When I mentioned my closed throat and inability to eat, she said “why, you must be on Total Parenteral Nutrition.  That’s my baby!”  Turns out she was one of the main developers of TPN back in the day, working in the trenches of Big Pharma.  So, thanks, Penny!  I’ll buy you a bag of steak and eggs when next we meet.

June 8, 2010

C Word, Sports

3 comments

For those following the numbers (and who isn’t):  total white count 530 (up from 340), neutrophils 210 (up from 140).  The docs remind me that these are just counts found in the blood, and many of my new new neutrophils are hard at work repairing the damage to my digestive tract, bless their little cellular polymorphonuclei, so not visible.  Their observed numbers may shoot up once that work has progressed.

Today I was largely focused on eating, since getting off the IV nutrition will likely be the gating factor in getting out of here.  Cheerios for breakfast, chicken soup for lunch, and the classic bland hot turkey sandwich with mashed potatoes for dinner.  Didn’t eat all that much, but it felt good, I haven’t been nauseous, and it actually tasted vaguely normal (considering it’s hospital food; it’s sort of what you’d expect from an earnest friend who’s trying hard to be healthy but just doesn’t know how to cook).

I am probably pushing the eating a little too hard, but I do have my deadline.  It will be a close call to get home by Thursday.  The mucus situation is much better, though still not gone completely.  I’m hoping the eating will help it move along.  My mouth is just about normal (for me, that is).

Eve came by and we watched Spain dismantle Poland in a friendly.  OK, I give.  I’m now a believer in Spain.  If Torres is willing to change his hairstyle for the team, that says it all.  Nani had been one of my main reasons for liking Portugal, and now he’s out.  This may give Côte d’Ivoire a shot at making it out of the Group of Death, although if they do they will almost certainly be up against Spain next.

And indeed as Lucy suggests the other big question is whether an African team will excel on African soil.  Looks to me like it has to be Nigeria, which I think has a legit shot at the quarter-finals.

Time to take another walk.

June 7, 2010

C Word

4 comments

Today total white count is 340, up from 160 yesterday.  Neutrophils are 140, up from 80.  So not quite double.  They talk about exponential growth at some point, I guess doubling qualifies.  Goodness.  This is Day 12.

Today I can swallow for the first time with barely any pain.  Do I start eating?  I can has cheezburger?  I tried a few spoonfuls of sugar-free gelatin, about the blandest thing there is.  Not bad.  Onward to milkshakes,and white rice.  I do have to get off the feed bag to get out of here.  Of course the first thing they push on me is my oral medication.  Maybe not quite yet.

Today’s item-type-item:  I was reading the webcomic xkcd when the night nurse came in.  She looks like she’s about 26.  She looked over my shoulder and said “oh, I really like that comic.”  I told her when my daughters see me reading it they say I’m such a nerd.  She says she’s starting a program in health informatics.  There you have it.

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