still on the carousel

Maybe not a carousel, but a roller coaster.

Went to the Oncologist yesterday to get the genetic test results.  Remember back in our last episode we were hoping for an error on Chromosome 5 because that was the most treatable.  It came back clear, which  means there are no chromosomal abnormalities at all, at least those associated with MDL.  This is also good news.  Heidi was classified as intermediate risk.  The large number of blasts is a high risk attribute, but the lack of chromosomal damage contributes a low risk, which averages out to intermediate.  Sounds good, huh?

The treatment plan for this is four months of injected chemotherapy.  This is, as I said before, not your father's chemotherapy.  It's outpatient stuff that doesn't result in hair loss, nausea, weight loss, etc.  The stem cell transplant still looms on the horizon, but not too bad for the first part. 

Then they took another blood sample to measure her blood counts.  Her red blood count was 8.9, higher than any other measurement so far.  Further good news!

Am I making it too obvious what's coming?
The white cell count takes longer so we didn't get the results till later in the day.  It tripled in 2 weeks.  Not good.  The doc looked at the cells under the scope and thought there were more leukemic cells than before.  He thinks the MDS may have transformed into full leukemia.  We always knew that could happen, but certainly didn't expect it to happen in 2 weeks.  Before even starting treatment.  Before even fully absorbing the change in diagnosis from AML to MDS.

Heidi went in this morning to get more bone marrow extracted.  The doc couldn't get a good sample the first try so Heidi ended up with hole numbers 3 and 4 in the back of her pelvis.  To ensure a good sample, the doc drilled extra deep the second time.  They wrote her a prescription for percoset this time.

They're hoping to get the bone marrow results tomorrow (Friday).  If the doc is right and it's full-blown leukemia, the outpatient treatment plan goes out the window.  And back through the door comes the full-blown 30-day hospital stay chemotherapy.  But we have to wait for the results.

So she's gone from tired to heart disease to leukemia to MDS and now possibly back to leukemia.  Yes, definitely a roller-coaster.

on hold on a Sunday

Nothing to report today.  We're still waiting for the results of the genetic tests, which are due a week from Thursday.  I probably won't write much or at all until then.  I don't want to leave y'all hanging, so this is a not gonna post for awhile post.

I started this blog thinking Heidi's trip to the hospital for chemotherapy was imminent.  I don't want to turn this into a daily log of unrelated events.  When something relevant to leukemia or chemotherapy or displastic cells or treatment decisions occurs, I'll post again.  Until then, Heidi seems fine, so no news is good news. 

Got the diagnosis from the Doctor

. . . went to the doctor and the doctor said . . .

I know 3 days ago I said I would fill in the remainder of the details the next day.  We went to the doctor, then that night I was at Ultimate Frisbee league.  Then the next night I was tired.  Okay, crappy excuse.  And this isn't about me anyway.

Heidi will start chemo in a few weeks.  But this isn't your standard live-in the hospital, lose your hair chemo.  It's stay at home and take one pill a day chemo.  That will probably go on for 4 months, unless something unexpected happens.  Which kind of chemo pill she takes will be determined by the genetic test ordered last week.  Certain pills target certain chromosomal defects.  Some defects are easier to correct than others.  A defect on chromosome 5 is the easiest, so everyone put good vibes on 5.

This does not cure the MDS.  It treats the symptoms by raising the red and white blood cell counts by genetically altering her bone marrow.  Since it isn't a cure, the disease will still be present, but she might be able to cope and conduct normal activities.  But how long is unknown.  It might work for a few months or a few years or not at all.

The only cure is to get a stem cell (bone marrow) transplant.  The doctor was very frank when he said we should not have this done in Tucson.  He recommended either Mayo in Phoenix, City of Hope in L.A., or Fred Hutchinson in Seattle.  Since we have family in Seattle, that is the natural choice.  The are world renowned for stem cell transplants.

The doc thought Heidi will end up spending several months minimum in Seattle.  Besides the procedure itself, they will want to monitor her before and after for months.  We're not sure yet how long she will be living there and how long she will be making periodic airplane trips.  Also we are not sure where I will be all this time.  We'll probably both getting lots of frequent flier miles.  My boss has been very accommodating about allowing me to make alternative schedules, working remotely, etc.  I'm not real sure how much work I could do weeks at a time living 1000 miles away.  But it's nice to know they will try to make it work for us.  Raytheon is very good about taking care of its employees and treating them like people. 

Conversely, Heidi is afraid to even ask what alternative schedules or workloads she could get where she works.  Perhaps her type of work is just not conducive to anything but M-F  8-5.  She certainly isn't acting sick lately.  But since her white blood cell count is low, it's an infection risk to be mingling with the public.  The doctor thought she could work at least part-time until he heard that she gets visits from Air Force residents with kids.  Kids are too generous when it comes to sharing their cootie-laden fluids. 

The doctor is going to refer her to Fred Hutchinson.  Then her insurance company has to approve.  He is also finding out from the Red Cross the procedure to get Toby and Robin HLA tested to see if they are potential stem cell donors.  If anyone wants to help, go to this site  and sign up to be a donor.  Except Toby and Robin shouldn't sign up here yet; you will get special instructions.  I've been on the donor list for 15 years and haven't gotten called yet.  Some say this is further proof that I am incompatible with most people.  Perhaps.

Diagnosis Received

Does this look like someone with leukemia?  Initially, nobody considered that possibility.  Now the test results back that up.  The bone marrow extracted last week came back negative for leukemia, but positive for MDS. Actually, it's not a black and white measurement.  MDS is referred to as pre-leukemia in some sites.  Apparently the density of defective red blood cells determines whether it is MDS or leukemia.  It's more of a sliding scale than an either-or.  Wikipedia seems to be more forthcoming with layman's info:  http://en.wikipedia.org/wiki/Myelodysplastic_syndrome

So it's not real clear what this means for a prognosis.  We have an appointment with the oncologist Wednesday afternoon.  Heidi discussed it with him a little on the phone today.  We think treatment is something like this, though I likely have some details wrong.

She will not go through chemotherapy, at least not here in Tucson.  There will be transfusions and medication, which I interpreted to be something like steroids.  The web site linked above says there is no cure for MDS, so perhaps this is a maintenance therapy?

There was also discussion about bone marrow (stem cell) transplant.  (But why go through it if it's not a cure?)  So, yes, Toby and Robin are still her best friends.  The oncologist here sincerely recommended not having that done here in Tucson.  That would probably occur in Seattle at Fred Hutchinson.  We're missing a lot of details here about when treatment will occur, how long it takes, what lifestyle changes will be required, etc.

Tomorrow more details.  For now, good news!

I ran 5.7 miles this morning. I was planning to go only a few miles, but here in Pinetop we're in one of those neighborhoods where the roads aren't straight and the intersections aren't perpendicular.  I got lost and ended up taking many wrong turns and winding along the long way to get back.  The tough part was that I was breathing so hard, being over 7000 feet elevation here.  The original plan was for Heidi to walk while I ran, but she seems to like sleeping in these days.  Last night her pulse was racing a little, so the extra extra sleep was fine. 

When I say racing, I mean over 60 bpm.  And that was part of the problem with her diagnosis.  It all goes back to when she was a kid, and the years of competitive swimming. 

40-something years ago, Heidi's older brother Toby, brashly told his parents after watching a swim meet, "I could beat all those kids."  His parents, thinking he needed to set more realistic expectations, put him on the swim team.  The next meet he did just as he said and beat them.  It wasn't long before Heidi was in the pool, soon to be followed by younger sister Robin. 

Workouts for competitive swimming are usually twice a day, 5 or 6 days a week all year round.  Where I would have been happy running a few miles this morning, that distance would have been a typical swim workout back in her swimming days.  A typical single workout, which was usually followed by a second workout later in the day.  Willamalane Swim Club was very good to Heidi, taking her to swim meets around the country.  And Heidi was very good to Coach Dan Cole, competing at a national-caliber level. 

That went on for many years, until she stopped getting faster and then decided competing at the college level wasn't for her.  Years later, I started running to keep the inflation pressure down on the ever-growing spare tire.  It was a natural for Heidi to join me running.  Coincidentally, we've been very close to the same speed for many years now.  She is usually a little faster on daily runs, but I usually beat her in races, unless I am recovering from an injury.  We've run together on Saturday mornings for many years now.  I've always been a pretty fast runner, but I have to work on endurance and durability.  Heidi is just a natural endurance athlete; she just hits a pace and can keep going forever.  She runs the same pace whether it's a 400 or a 1/2 marathon.  It's funny how a die-hard sprinter like me can run the same pace as a natural long-distance athlete like Heidi.

And that was part of her problem with getting to a diagnosis two months ago.  The same reason she was such a good swimmer and such a natural distance runner was her slow-twitch muscle fiber and strong, slow heart.  She went to the doctor complaining that her pulse was racing and she was easily tired.  The doctor measured her pulse at 60 and determined everything was fine.  Heidi pleaded that it was very high, much higher than her normal rate of 40 bpm.  Admitedly, I gotta cut the doc some slack for not believing her.  A pulse of 60 is okay for 99+% of us.  (But the doc doesn't have any excuses for not ordering a blood count as part of her physical.) 

Thus began the appointment with a cardiologist, the ultrasounds of her legs and the scheduled angioplasty.  None of them believed her pulse was abnormal.  But it was.  And still is.  So I let her sleep in.

In Pinetop, AZ

We were supposed to be on vacation this week in Seattle, but airflight was nixed by the oncologist.  Instead this week, I went to work and Heidi spent the week at home.  It was kinda like being a homemaker for her, except with more moping and the impending trips to the hospital still looming.

The latest prediction for the start of chemo is next Tuesday.  So this weekend we're fulfilling our destiny and taking a vacation.  Pinetop is in the mountains in eastern AZ.  We're at 6000 feet,  there are trees, rivers, and mild temperatures.  Very nice.  (Props to the generous neighbors who are letting us stay in their "cabin.")

Not a lot else to say.  I started this blog thinking there would be daily updates of Heidi losing her appetite, losing her hair, etc.  That will start eventually (unfortunately).

The only thing to report is a repeat of last post.  Heidi had the bone marrow extracted again 2 days ago.  She almost received another transfusion yesterday, but the doc decided she was okay for the weekend.  Results from the bone marrow tests should start trickling in on Monday.  Presumably decisions will be made then, resulting in checking in to the hospital Tuesday.

Until then, we are enjoying a relaxing weekend.

One more time 'round the roller coaster

With all sincere apologies to brother David, I gotta vent.

Two months ago Heidi started feeling fatigued.  Her doctor didn't want to take it seriously.  She was easily tired, but nothing really seemed serious.  She started going through test after test and everything came up negative.  Because of the lack of positive evidence, we tried to go on a hike 2 weeks ago in Madera Canyon.  Just an easy 6 mile round-trip.  After a couple hundred yards she had to turn back.  This whole time the cardiologist said her condition was not serious and her internest had no interest in her symptoms.

Then we went to the hospital for the angioplasty and her blood came up anemic.  That event started the klaxon horns.  Ever since that moment, the nurses, doctors and staff have been on edge.  They wouldn't let her leave the hospital.  We (mostly me whining) asked why.  Then they wouldn't let her leave town.  We (mostly me whining) asked why.  Then they wouldn't let her fly on an airplane.  Keep in mind, all these they wouldn't's occurred after 4 transfusions.  Before the transfusions, she felt like shit, but nothing was serious.  After 2 nights in the hospital and 4 transfusions, the sky was falling, but Heidi felt fine.

So who do you believe?  The medical practitioners who said everything was fine when she felt like shit but predicted imminent doom after she felt fine, or Heidi, who said she felt . . . like shit before and better after?  Or me, who says . . . well I say she still looks damn good.

Well, I can accept some indecision.  Unlike where I work, this isn't rocket science and her condition is, admittedly, not routine. 

Chapter Two.  While in the hospital we discussed options, precautions, care, prognoses, diagnoses, etc. and thought we had the whole story.  Turns out the hemetologist didn't order what later turned out to be important genetic tests with the bone marrow.  These tests, says the latest oncologist, are very important to detemine the course of treatment.  Turns out further, that the original diagnosis is being questioned.  Maybe Heidi doesn't have Acute Myelogenous Leukemia but something else called Myelodysplastic Syndrome.  All this is uncertain at this point because of the non-conventional way the original hemetologist secured the bone marrow sample and sent it in (or didn't send it in) for tests.  In other words, the second doc wants to secure another bone marrow transplant and send it in for tests in the conventional way.  So tomorrow Heidi gets to go to the clinic to extract more bone marrow.  The original warning not to leave the hospital, which was postponed to checking in tomorrow, is now being postponed till next week. 

Two weeks ago it was very strictly verbotem to leave anything or anywhere, and we had to decline our non-refundable airfare to admit to the hospital this week.  This week, all previous results are out the window and plans to check in are out the window and past the back yard. 

So here we sit, uncertain of a diagnosis and uncertain of what treatment will start when.  Oh, and uncertain of what outcome to expect.  Heidi went on a leave of absence 2 weeks ago.  I am still at work, even though this week was supposed to be vacation.  Ever go back to work early for some less-than-appealing reason and have to sit at your desk wishing things were not as they were?

Where am I going with this?  I'm not sure.  I said writing this blog was partly just therapy for me.  I feel better now.

Sunday at Loews Resort

We drove up to Provo, UT yesterday to watch the Huskies play BYU.  That's the third time we've seen Husky football since we left Seattle:  at Hawaii, at ASU and at BYU.  Each time we lost.  Worse, each time we didn't even play well and could have won if it hadn't been for stupid mistakes.  We still have tickets for the Arizona game in October, so that will be the start of our turnaround.

We overdid season ticket purchases for everything this year. I assume it’s a backlash from the lack of cultural activities on Maui, but this year we have season tickets to Arizona Opera, Tucson Symphony, a Broadway show series in Tucson, and a 6-show package at the University of Arizona. That is overdoing it.

Of course, attendance at any of these depends on where Heidi is in her treatment cycle. If she’s in the hospital we’re not going. If she’s home but in a state of depressed immune function, we’re not going anywhere where she could be exposed to sick people. If she’s home but not very energetic, we’re probably not going to sit outside in 90-degree heat watching football. We have only one event booked in September for a show that runs through October, so that will be easy to reschedule. It appears, though, that stubhub.com may become a good friend of mine.

The drive to Provo made much more sense back when we were going to continue on to SLC and then fly to Seattle. We had planned to drive a rental car so we could drop it off at the airport. Now the trip to Provo was just a 300-mile side trip. Too far just to watch your football team lose.

Now I’m too tired to write anymore. Why am I tired? No coffee places around. Utah should be known as the Decaffeinated State. It’s always been SOP for us to hit up a Starbucks as we’re driving away from a destination. The first one on our route today is 220 miles away. It’s going to be afternoon before we get there. What do people do in college here? There were a couple coffee joints near our hotel, but the first one we found was closed because it’s Sunday. Utah has fewer places to get coffee than any place we’ve ever been, I think. Maybe the South Pacific has less. Maybe.

In Henderson, NV now.  We had 12 hours to drive home from Provo and didn't want to do it in one day.  There were a couple options for driving home, and Las Vegas was one.  With a little more planning we could have gone there, watched a show and then driven home the next day.  But, instead, we decided to stay at The Loews Resort on Lake Las Vegas.  Normally we don't seek out expensive hotels.  We go places to see things that are outside, and the room is just a place to sleep.  But when your wife is starting chemotherapy for leukemia in a few days, those kinds of concerns go out the window. 

This is the kind of resort where many of the guests are dumpy guys with trophy wives.  We used to see that at the resorts on Maui too.  Only now the trend is for the women to bring their little fufu dogs to walk around the grounds.  My favorite is when they have two dogs, but the guy is too macho to actually walk the dog so he just carries it.  I can't tell how having your dog with you improves the resort experience.  Maybe I gotta gain 30 lbs to figure it out.

Day 2 at Zion National Park

Heidi said she had syrup with breakfast 5 days in a row.  Not plain syrup, but syrup on pancakes, syrup on on french toast, syrup and waffles, etc.  (Later she corrected herself and said one of those mornings she had cinnamon roles instead.)  She said that was a new record for her—she normally doesn't eat breakfast.  But she's trying to fatten up a little so her fat reserves can carry through times when she won't be able to eat much.  She called me at work last week complaining that a milkshake she ordered at Chili's didn't come with the extra that didn't fit in the glass and it didn't have any whipped cream or a cherry.  If you plan to visit her in the hospital, please don't make that mistake.  As you can see in the photo at the left, her weight gain plan doesn't appear to be working, though she claims the scale tells otherwise.

Chemotherapy is supposed to start next week, either  Monday or Tuesday.  The doctor is supposed to call us today and let us know which day.  We have tickets to watch the Huskies play at BYU tomorrow night, but if chemo starts monday morning, we don't really have time to drive up to Provo. 

Just talked with the doc and found the original oncologist never ordered the gene/chromosome tests.  Yet more validation that parting with that team was the correct choice.  I need to rant about how healthcare has changed; that will be for a future blog.

After the initial diagnosis of AML, I did some reasearch on the web to find out the prognosis and treatment plan.  Most sites discussed different plans that depend on which subtype of AML.  But our doc said that information is obsolete.  (The wikipedia link above has the genetic discrimination info consistent with our doc and the subtype description.)  Now the treatment regimen is as follows.

Induction chemotherapy follows the 7+3 plan, which involves 10 days of poison via IV.  This first phase usually results in a 3-4 week hospital stay.  This part is the same for everyone with AML.  Then, depending on your genetic makeup and the AML subtype, Heidi will either endure Consolidation chemotherapy (more IV poison) or bone marrow transplant.  If bone marrow transplant is needed, sister Robin and brother Toby will likely become her best friends.

The doc said the bone marrow transplant program at the UMC in Tucson is, in his words, disarray.  He recommended going elsewhere, either L.A., the Mayo Clinic, or, once again in his words, The Mecca for bone marrow transplant, Fred Hutchinson in Seattle.  Since we have family in the Seattle area, that would be the obvious choice.  But we're hoping she has the better genetic makeup type and we don't have to pursue that step.

Anyway, the doc said the genetic tests were not ordered.  So we don't know the genetic makeup.  Meaning Heidi has to have another bone marrow extraction.  This involves a stout needle inserted into the pelvic bone from the back.  Requires local anethesia and leaves a bruise, but she said it's not that bad. 

Monday is a holiday.  If they were ready to start chemotherapy, the hospital would be open and she could start.  But the doc and the clinic have the Monday off.  Thus, the decision to start chemo can't be made until Tuesday so she won't be admitted until at least Tuesday or probably Wednesday.  Further thus, we can go to Provo tomorrow to watch some football. 

As an aside, let me point out that this extra 4 hours of driving is not just for me.  Heidi had season tickets to Husky football games for 10+ years.  This is just as much for her. 

Other things we know about her hospital stay.  She will be coherent and have access to her laptop.  The chemo drugs are given for only 10 days, but the low point in her energy and immune system occur around day 14.  Then should start getting slowly better.  Germ-free visitors (no sickies) are allowed, even encouraged.  She'll be able to walk around the floor, but she can't leave.  She'll probably lose her hair.  She may not be hungry very often, but the doc says the chemo drugs don't cause purging as much as they used to.  With a starting date of Sept 8, she should be out sometime around the end of the month.  Her laptop has a webcam so video chats are possible.  Maybe she'll even check her Facebook account.  Maybe.

Vacation Day 2

Drove to Zion NP today.  Nice drive, though 6 hours long.  We've been here once before, about 21 years ago.  The kids were small then and we were squeezed into a compact sedan.  Things were much different then.  One big difference is we didn't have the inescapable nagging feeling in the pits of our stomachs that this is the last trip before Heidi gets her first trip to the University Medical Center.

Oh, another big difference.  I got a speeding ticket at the north end of Arizona, just before crossing into Utah.  He said I was going 80 in a 65, but wrote the ticket for 75.  Very generous.  A few days ago that would have really set me off.  But by today I am well past anger in the 5 stages of grief.  I thought about trying to evoke pity with the officer by claiming my wife has leukemia and is starting chemotherapy in a few days . . . and I was speeding to . . . well, that doesn't really work.  Woulda come across pretty pathetic, and he wouldn't have believed me anyway.

Denial, anger, bargaining, depression and acceptance.  Supposedly the 5 stages of grief.  I don't really remember a denial stage, though I did try to convince the first nurse she was mistaken when she first asked about anemia.  Maybe that counts. 

Anger came quickly.  For a few days there I didn't feel real receptive of anybody's bullshit.  At work, from friends, family, everybody and everything.  Though there can be occasional attempts at testing at work, fortunately I have had very few challenges recently.  It was good because I wasn't really inspired to work hard anyway. 

I don't remember bargaining.  Perhaps that's because I don't believe in a deity.  After all, who else can you bargain with when it comes to leukemia?  Nobody else but the all-powerful would be worth contacting to try to strike a deal.  Or maybe the bargaining should take the form of, "just give me one last vacation with her."  No, that doesn't work.  First of all, I already get that, well, I get part of a last vacation.  Second, that isn't anywhere near good enough--nothing less than full remission would be worth bargaining for.  Third, we have so many other vacations already planned.  We've already picked out 5 years worth of vacations to take in the Southwest.  We've already planned our post-Tucson years: a stint on the east coast, then England, perhaps Europe, then if we have enough energy, Australia and, well, it gets kinda dicey after that (we haven't planned when it will start, but where).  There's no amount of bargaining that could make up for that.

I don't think depression was a separate stage.  During many of those angry days I felt like my eyes were contstantly tearing.  Same for Heidi.  Everytime somebody calls, she ends up in tears.  When she went to work, she and everyone at work were crying.  It's nice to hear people are concerned, but it is trying to have this recurrent, unexpected emotional hijack several times per day.  Part of the reason I'm writing this is to answer some of the questions that she and I have already answered with broken voices and lumps in our throats many times.  I'm expecting depression to be our companion for some time.

Finally, acceptance.  I think both of us are there now.  Which makes some of the tearful conversations even more awkward when I am matter-of-fact and the other party is blithering.  Once again, I don't fault or blame or disparage anyone for calling and showing concern.  Really, I would be more resentful if y'all didn't.  But, really, I for one, and Heidi to a lesser extent, are accepting this thing and are mounting a battle plan.  Not that my part is all that brave or gallant.  But it does help Heidi to see that I am acting rational and steady and confident and keeping my blithering to a minimum.  Or so it seems.

Vacation Day 1

In Anthem, AZ right now at a Hampton Inn.  Drove here from Tucson after work today.  (The photo at left is actually a few days ago in Tucson with granddaughter Kylah.)  Well, not directly after work.  Went to the Oncologist at 2:30, got more bad news, then went home to load the car and hit the road.  The original bad news?  That was delivered to us 5 days ago at the hospital.  Heidi, my wife for 30 years, has leukemia.  Acute Myeloid Leukemia, a particularly nasty type of leukemia.

Originally, vacation was supposed to last 10 days, but the oncologist told us today we need to start treatment sooner.  He also said that she is still anemic and in danger of overstressing her heart or getting an infection.  Oh yeah, the anemia.  What a long strange trip it took to get to that diagnosis.

It all started a couple months ago.  Heidi couldn't run very well.  Then she couldn't walk uphill.  Then she started complaining that her heart was pounding just lying down.  A trip to our primary care doctor wasn't much help.  The doc didn't think anything was wrong, but based on a family history of heart disease, Heidi convinced the doc to let her wear a 24-hour heart monitor.  That showed an "irregular heartbeat."  How indefinite.  Part of the problem was Heidi's pulse rate.  All her life her resting pulse was usually in the low 40's.  A pulse in the 60's was really racing, but the doctor wouldn't buy it.  She thought that was normal.  Still, since the heart monitor showed "irregularities," it warranted a trip to the cardiologist. 

By this time Heidi's ankles were swollen.  I thought it made a lot of sense to get a blood test, thinking there was some electrolyte imbalance.  In retrospect, that is exactly what was needed.  I didn't have the diagnosis correct, but I guessed right on the diagnostic.  Unfortunately, Heidi wasn't insistent enough with the doctor, so no blood test was ordered.

The cardiologist ordered an ultrasound of the heart to examine flow and ultrasound of the legs to look for clots.  I suggested blood test to Heidi several more times (yes, I get to say I told you so a few more times), but Heidi didn't suggest it and the cardiologist didn't order one.  I believe the appropriate analogy is:  when your only tool is a hammer, all problems look like a nail.  The cardiologist nailed this one as a cardiovascular problem and ordered an angioplasty. 

One week ago today we arrived in the hospital for the angioplasty.  First thing to do before surgery is to check the blood.  They drew blood and then we waited.  Thirty minutes later, the nurse came back and told us they need more blood for additional tests.  I wonder if they teach how to tell white lies in nursing schools.  Finally the blood results came back for the second test and the nurse asked, "How long have you been anemic."  Thinking they got us mixed up with another patient I quickly replied that she is not here for anemia.  The nurse gave us that look, well, that other look that also must be taught in nursing school. 

Then Heidi got put on a bed and hooked up to an IV.  Actually, they put the needle in her arm but wouldn't hook anything up.  Everyone knew she needed blood--the nurse emphasized many times that her blood count was dangerously low.  But until a doctor showed up, no blood would be given.  Finally the cardiologist showed up and was informed the angioplasty decision was a bad one.  He wouldn't order a transfusion because that wasn't his area of expertise.  The staff hemetologist was summoned and promptly showed up 7 hours later. 

During this time I was asking pointed questions to everyone in a blue smock about how safe it was to be withholding food and water from someone who fasted all night and came in with a blood count that was dangerously low.  Heart-attack risking low.  The nurses gave that other look, acknowledging that everyone knows what is needed--even someone who isn't trained in medicine--but they are powerless to take step one.

The transfusions started flowing about 2pm.  I went to work.  They managed to infuse two pints that day.  I came by the hospital after work to check in.  Heidi said her urine was really dark because she hadn't had any water.  She also hadn't had dinner.  So I asked the nurse for food and water.  They found some leftover sandwich dinners.  Then I asked for water.  Then I . . . let me think . . . yes I believe I asked for water.  Again.  And the water arrived. 

I mentioned this poor service to the hemetologist the next day.  It wasn't received very well.  So just for the record, let me explain my position on this.  Even though the hemetologist won't read this, I need to write it down.  This is therapy for me too.

I don't expect the nurses and nurse techs to be restaurant servers.  My point to the Hemetologist is that she needs to think about treating the whole person, which includes intangibles like how hard it is to get food and water.  I accept that those things aren't going to be readily available as they are at home.  I tried asking questions such as, "Explain to me why being in the hospital is better than being at home."  Okay, it's not really a question, but a statement. 

So in the end, Heidi stayed 2 nights in the hospital and took in 4 pints of blood.  They extracted bone marrow, a stool sample and many blood samples.  She looked much better after that, ankles reduced, skin color better.  Her heart rate was back down in the low 50's.  She came home and we started researching. 

One thing was clear.  We would not be starting treatment at that hospital.  We would not be going back to our primary care physician.  A clean break at a new hospital.  University Medical Center (at the University of Arizona), here we come.