Archive for September, 2010

September 30, 2010

9-30-10 Thursday

Status: 9.0/10.  Feeling  a little fatigued of late, most likely from the sorafenib I’m taking, and I’m just getting over a cold transmitted from school to the kids to Lisa and then to me.  Amazing how these little viruses work.

Events:  An excellent day and chat with our oncologist at Hopkins.  Getting up there was a hassle with bad weather and flash flood warnings up and down the East coast, jack-knifed trucks and wrecks all over the place.  My oncologist was all smiles – the bone marrow from last week was totally normal – just what he, and we, were looking for.  Even the flow cytometry (a very sensitive measure looking at individual cells) showed no evidence of leukemia.  Brought a big smile to Lisa’s face. 

Now, we both know, as does our oncologist, that somewhere hiding in some crevice is a leukemia cell, somewhat shell-shocked from all the previous chemotherapy, mending its wound, but still alive.  And just as my own marrow has resurrected itself from the poisonings, this guy will come back too if not disposed of.  Hence the soon hoped for transplant.  The donor received his/her evaluation today, and preliminary messages are that we may be on the schedule for our next marathon in about 2 weeks.

Comments:  During our visit, our oncologist relayed that one of the evaluation test results was positive.  It was my RPR (rapid plasma reagin) test.  That’s the blood test that many states require before they will issue a marriage license – it’s a test for syphilis.  My RPR had previously been negative.  At oncology conference he had asked his colleagues if they knew anything that would cause a test that was negative one month ago to turn positive.  One of the wags attending quipped, “Depends on what he’s been doing the last month.”  So much for medical humor.

The RPR is a screening test that looks for antibodies.  It’s about 100% sensitive, which means it will pick up virtually every case, exactly what you want in a screening test.  But it will also pick up other conditions as well, such as mine, which was a biologic false positive.  I’ve had so many medicines and procedures and weird things going on in my body that apparently some proteins in my blood made the test show up positive.

  It’s much like a thermometer.  It’s a very good screening device for a bacterial infection.  In fact, it’s the device they use on me in the hospital every 4 hours looking for an infection.  But not everyone who has a fever has a bacterial infection or even an infection at all.  To confirm there’s an infection we do cultures, which are more exact and costly.  But if you’re trying to pick up every infection, a very sensitive screening test like temperature is a good, fast, and cheap way to do it.  The RPR test is the same.  To confirm whether a patient actually has syphilis, you have to do another test looking for specific antibodies to the bacteria that causes syphilis.  They did, and of course mine was negative.

 We’ll keep you up to date on our schedule.




September 28, 2010

9-27-10 Monday

Status: 9.0/10.  Doing fine.

Events:  Wonderful friend Eileen Breslin was in town for a meeting and dropped by.  Eileen is Dean of Nursing at the Univ of Texas Health Science Center at San Antonio, and her husband journalist Bill Israel has a book coming out next month on Karl Rove – pretty good timing.

Comments: Next visit at Hopkins is Thursday, the same day donor #4 is supposed have his/her evaluation wherever that is.  I’ll delay boring you until Thursday and give you an update.



September 25, 2010

9-24-10 Friday

Status: 9.0/10.  A quiet day at home.  Just checking in.

Events:  The family is going to see the Nationals play the Braves tomorrow. Otherwise, a serene weekend.

 Comments: We’ll check back in on Monday.  Enjoy your weekend.



September 24, 2010

9-23-10 Thursday

Status: 9.0/10.  Back to feeling my old self again after all that poking this week.

Events:  Didn’t realize until Lisa reminded me that our consultation with our oncologist is next Thursday, not today.  So I have a week at home!  Good thing she’s here to keep everything straight.

Comments: Of course, what we are waiting for is a go date for the transplant, but that all depends on having an available and healthy donor.  We do have 5 matched donors, and it’s a good thing we do.  We get all our information from the Hopkins transplant coordinator and have no access to the donor or the process.  But this is what she told us.

  The first donor said they didn’t want to donate using bone marrow but a technique called aphaeresis in which they filter out bone marrow stem cells from the peripheral blood.  Understandable since you don’t end up with a sore hip, but transplants with aphaeresis material have a higher rate of a particular immune complication after transplant, and Hopkins would rather not go that route.

 Donor #2 said he can’t be available until November, and #3 said he was too busy right now. Fortunately, donor #4 is willing and able, and the team is working to get him evaluated quickly.  If things work out they could start the transplant process in about 2-3 weeks.

  The system allows you to evaluate one donor at a time, so each “no” soaks up valuable time.  Lisa was somewhat disheartened and perturbed at the donor response.  She felt that they didn’t understand or perhaps had not been explained the commitment entailed in volunteering to be a donor.  There’s a small time window, and the feeling of, “I’m happy to volunteer if it’s not inconvenient,” doesn’t work well at this end. 

  We’re crossing our fingers and hope we can move forward.   



September 23, 2010

9-22-10 Wednesday

Status: 8.5/10.  Very Long day at Hopkins, didn’t get home until 7:30 PM, a little worn out.

Events:  An EKG, echocardiogram, pulmonary function tests, and a lumbar puncture.  It was the last procedure that did me in.  Couldn’t get into one interspace after several tries even with the use of fluoroscopy, tried the one above it, hit a nerve root (hard to adequately describe the sensation, but it’s like being electrocuted).   Watched a woman trip in the cardiology waiting room and face plant on the carpet.  I had to keep repeating she had tripped and not passed out to stop them from trying to give her CPR.

Comments: I could relate more, but on the advice of Lisa I’m going to just take it easy this evening.  Tomorrow we meet with our oncologist to talk about the upcoming transplant and hope to have some information on scheduling.



September 21, 2010

9-21-10 Tuesday

Status: 9.0/10.  Long day at Hopkins.  

Events:  Began the evaluation process again. Usual blood drawing, but this time with about a dozen tubes extracted and an estimated 50 cc going to labs all over the hospital.  Then a physical and update with my physician assistant.  I have a consistent team of my oncologist, physician assistant, and oncology nurse. They email and call each other continuously so everyone knows what’s going on.  Got to see my labs, which are great.  My white cells and neutrophils are as good as yours, and my hematocrit and platelet count keep increasing.  Then a CT scan of my chest and sinuses.  Takes about 2 minutes, and I can’t think of a better way to get more radiation per second.

  Then on to my bone marrow biopsy.  There’s space for marrow in most of your bones, but it’s almost always taken from your hip (more precisely from your pelvic bone a few inches on either side of your spine).  You can take it from your sternum, but it’s more hazardous since you may go thru the sternum into your chest.

 I’ve had a half a dozen by now.  The first one was piece of cake, but each subsequent one has been more uncomfortable.  Today’s was a doozy.  They numb the skin and underlying tissue with lidocaine, but ironically the numbing action is one of the most uncomfortable parts of it.  It’s because the person performing the procedure injects a lot of lidocaine very quickly.  And as any good dentist will tell you, if you do it slowly and take your time you get higher marks.  Then they drive a large needle into the pelvic bone and into the bone marrow, followed by aspirating (sucking out) marrow with a large syringe.

  Most folks report the greatest pain when they first pull on the syringe creating a vacuum – a quick twinge.  Today I’d say the pain level was about 9/10, and it continued throughout the entire procedure.  About 10 cc are usually withdrawn, today they took 50 cc and some time to do it.  Left me a little sweaty and a little nauseated.  Not the highlight of my day.

Comments:   Lisa says I’ve been hoarse for a week or so, and I’ve noticed my Eustachian tubes blocked up with everyone sounding like they are under water.  CT scan of my sinuses were normal, and I’m guessing it may be fall allergies – it’s been one of the worst allergy seasons up here.  I usually have to take an anti-histamine only in the spring and never had autumn symptoms before, but I’ll start on an allergy regimen.

 Tomorrow another long day of tests.



September 21, 2010

9-20-10 Monday

Status: 9.0/10.  Feeling a little fatigued, but that may just be due to this new medicine I’m taking.  

Events:  Going up to Hopkins in the AM for the start of my transplant evaluation

Comments:   I’ve done all these once before, but the results are only good for 30 days.  So it will be a busy week.  Tomorrow I’m scheduled for a baseline history and physical, lab studies, a bone marrow biopsy, and CT scans of my chest and sinuses (sinus and lung infections are common when you lose your white cells), and these will be used as comparisons with any future CT if an infection is suspected.

  The transplant program is talking to 2 donors right now to setup their evaluations (they are already known matches), and we hope to have a schedule for the transplant soon.  At this point, I have mixed feelings.  One is, “Let’s get this show on the road!”  The other is, “Oh, my gosh, what have we got ourselves into?”  The transplant process is much more rigorous than my previous two chemotherapy protocols, with a whole new set of complications and side effects.  We’ll discuss all of that as we get closer to transplant.



September 17, 2010

9-17-10 Friday

Status: 9.0/10.  Feeling just fine, thank you.  

Events:  A good day at home.   Lisa’s working, and the kids are at school.

Comments:  I was surprised but not shocked when we received the bill for my first hospitalization, which totaled a cool $250,000. The second hospitalization was just a little less, and the week I spent in the hospital for sepsis probably ran about $50,000.

 What did shock me was how much my outpatient visits for blood work and transfusions cost.  A short visit for blood drawing and platelet transfusion runs about $5200, and I’ve had quite a number of those.

 The latest charge for my newest oral medicine ($1,800 a week) was not authorized by our insurance company.  We are appealing that decision, but, of course, I’m going to keep taking it.  I called the Hopkins pharmacy, and I asked them if they could possibly mail it to me, since we didn’t want to make a 2-hour trip to Baltimore just to pick up a prescription.  The pharmacist laughed and said, “Dr. Dan, for that much we’ll walk it to your house.”  I told them FedEx would work just fine.

 Although my situation is at the extreme, I keep thinking about all the folks without health insurance or without adequate coverage and what a life-threatening illness would do to them.  There’s enough stress in all of this without adding financial worries.

 I hope your year is free of worries and wish you the blessings of good health.  For those of you celebrating this weekend, I wish you an easy fast.  I’ll talk to you on Monday.



September 16, 2010

9-16-10 Thursday            

Status: 9.0/10.  

Events:  A good day to be away from Baltimore.  I was safe and sound in Bethesda.

Comments:  Onto Lisa’s other suggestion.  Your skin (and its contiguous mucous membrane, the GI tract) may be the most important part of your immune system.  It’s your outer armor, a Maginot line protecting you from attacks coming from the big outdoors.

  The outer layer, the epidermis, is a living organ.  It goes through a life cycle with new cells being born at the bottom and dying by the time they migrate to the top.  So the outermost layer is composed of dead skin cells (called squamous cells), which slough off.  You normally don’t notice them unless you get a sunburn when they all slough off in sheets or have the excessive flaking of scalp cells we call dandruff.  But we are all turning over our skin day by day, minute by minute.  And although you may not notice it, you are leaving a trail behind wherever you go.

  These dead cells make a nutritious meal for mites, which is why mites like to inhabit your pillowcases and bedding.  Those flakes also are covered with all the bacteria from the outside world that your skin protected you against.  So a number of hospital operating rooms have special air flow systems setup to keep the floating, bug-laden debris out of the air.  Computer chip manufacturers do the same thing in their “clean rooms.”

The chemotherapy I received not only was an acute injury that affected my fingernails, but my skin as well.  Like a reptile, I have shed my skin.  Not in one huge piece on one day, but in billions of flaking squamous cells from head to toe (body dandruff) over several weeks now.  All my clothes have been subject to a fine dusting, enough so that any CSI agent with a DNA kit would know it was me.  

Tomorrow – the cost of health care.



September 15, 2010

9-15-10 Wednesday      

Status: 9.0/10.  Another good day.  Just the pleasure of sleeping late, eating when I want, being free.  So much we take for granted.

Events:  Going to a reception for new parents at Rachel’s high school this evening.  Although it’s a crowd, it will be composed of adults.  Now that cold and flu season is back (kids in school) I’ll stay away from any large collection of little ones.

Comments:  First let me answer Margot’s comment from yesterday concerning the color of blood.  Despite the old wives tale that blood is blue (why is it that old wives always get this stuff wrong), the blood of vertebrates (animals with a backbone, like mammals, fish, birds, and reptiles) is red.  That’s because it contains hemoglobin, which uses iron to transport oxygen.  And just like rust (another combination of iron and oxygen) it’s red.

Now, highly oxygenated blood (arterial blood) is bright red.  Blood with low oxygen levels (that in your veins) is a deeper red, a burgundy or a maroon – a pinot noir if you will.  Certainly a dark red but definitely not blue.

Some animals (non-vertebrates) do indeed have blue blood, for example the octopus and some mollusks.  That’s because instead of hemoglobin with its iron, they evolved with hemocyanin with copper as the oxygen carrier.  And instead of hemoglobin packaged in individual red cells, the hemocyanin is simply dissolved in their plasma.  Hemoglobin is a much better carrier of oxygen at colder temperatures, which may be one reason you never find octupi in the Arctic.  And of course, I can’t leave this without mentioning Star Trek’s Mr. Spock, who apparently had green blood.

On to Lisa’s suggestions: I had noticed an interesting feature in my fingernails.  On all ten, I have two white, horizontal lines that go completely across the nail, and a width of about 1/6 of the nail length.  They are separated from each other by about ½ a nail length.  They are called Mee’s lines and represent something that caused a growth disturbance in the nail. 

 Those somethings were my two hospitalizations for chemotherapy.  Like rings on a tree, the two lines nail down the length of and the time between my two experiences.  Over time, I have watched the first one grow up the nail, like a wave onto shore, and then watched the second one arise and travel forwards as well.  My oncologist says that in some people who have received multiple chemotherapies he has seen up to 3 on a nail.  In the past, they were used as evidence of arsenic poisoning.

Tomorrow, some notes on their counterparts – the skin.