Changes

Good Morning All:



For two years now (off-and-on) I have posted the progress and the setbacks of my ongoing treatment for Acute Lymphoblastic Lymphoma/Leukemia. I have interjected humor where I saw it and expressed worry as I felt it.

It is not lost on me that I have not posted recently and I'd like to share now why. One week ago the very tone and tenor of my treatment was changed. In a meeting with an attending physician regarding the delays in my receiving the treatments from the clinical trial in which I was enrolled, we received stunning news--I was no longer able to physically withstand active cancer treatments, that no further treatments were to be recommended, and that I ought to start focusing on quality of life--what remains of it. The cancer was still there and would ultimately "win."

It took Marla and I easily three full days to digest and to begin dealing with this information. How do we tell the kids? How do we tell others? Is this where one calls an organization like Hospice (and if so, why doesn't someone come out and say so).

After subsequent meetings with doctors and staff at Hopkins a plan is beginning to crystallize for dealing with the ongoing physical decline that I will assuredly have to endure.

I do not know the extent to which I will have the energy or desire to continue the blogs--I think we'll have to wait and see on that. I do monitor the responses to my posts and this one won't be any different.

A question we anticipate relates to visitors. There are many emotional and practical considerations with regard to the frequency, duration, and timing of any visits and so I know I speak for Marla when I ask for your indulgence as we sort through these very new issues.

Finally, I thank you for all your engagement, encouragement and laughs. I cannot ask for any better support network than the one I have had behind me all along.

As always, thanks for reading.

--Russ.

Oh, those red herrings . . .

Good Morning All:



I can remember times during my professional career where it all seemed so clear. I'd drive to work thinking over the 3 to 5 items I was working on and how I'd approach them. A calming sense of clarity on the bigger picture made the rest of the drive, getting into the office, turning on the PC a veritable walk in the clouds. And then . . .



A coworker leans in the doorway and informs you of a brewing fire. Your boss asks you to take on a new project--meeting's at 10:00. And there ends your chance of being "The Machine" that you envisioned while walking in the clouds.



Sorry for the delay since my last post. The administration off the actual drug occurs on Mondays. The second dose hasn't been as kind and again, omitting the gory details, has really taken a toll. So the team and I have chosen to skip the third dose. This will allow my strength to recover.

It is funny how at times doctors can fall prey to a red herring. A couple weeks ago during a routine platelet transfusions hives started breaking out on my arm, legs, and torso. They spent 3 days trying to figure out (pending the results of one outstanding biopsy) that it was related to the transfusion

The classic, and I laugh now as I type from home, was when I went into the hospital with a high fever. They kept me for 3 weeks trying to figure out what the source of the fevers were but also with the full knowledge that this disease caused fevers too. Curiously no full body scans were ever run to try an find a malingering infection. Hundreds of tests, cultures, a few CT scans all came back with zero. They threw up their hands, said, must be the disease, and released me.

I had a nice recompense of this earlier time just recently when I was admitted for dehydration. The resident on rounds asked me a question then opened the floor. I asked what I was here for and he replied "to find the source of your fevers." I told him that was not the likely answer. Sure enough the rounds team comes along, and the attending's plans were for the restoration of fluid and nutrients that might have been lost.

This has been my frustration from the beginning. There is little more I can say on this topic that hasn't appeared elsewhere on my blog--So I won't belabor it. I recall pictures of herds of buffalo being driven over cliffs by American Indians? My bet is that some of those buffalo decided to make a left turn and run for it. I bet they were fat content buffaloes.

As always thanks for reading.

--Russ

First Dose Update

Good Afternoon all:

I was originally hoping to write a post proclaiming that the new protocol started yesterday but, man, it was busy. From about 9:00 to the time we left, 6:15, there was a never ending stream of people poking, prodding, giving me this medicine, hanging that bag of fluid (or medicine).In the end I had very little time to do anything (except sleep off what I think might have been 3 doses of Benadryl).

So, the medicine from the clinical trial has been infused. I now have super human strength, the ability to lift comically heavy things like freight trains, and can scatter molecules (yours or mine) to the four winds.

Oh, that might have been the dream I had last night. As I report on the progress of this new trial I will try to maintain an even mix of both reality and optimism.

Clearly, the first day after receiving my first weekly dose cannot yield much but I can report the following:
1. The side effect that the consent form showed as effecting 100% of patients did not waste any time finding its way to me. (Don't ask, you'd rather not know)
2. My white blood cell counts today rose pretty dramatically and were higher since March by my Dad's reckoning. Still no neutrophils, but the number of white blood cells is a promising sign.
3. Are my fevers under control,or closer to it? I went to bed last night with a borderline fever but not hot enough for Tylenol. I checked throughout the night and my temperature dropped instead of continuing its inevitable march upward.

I've entered this trial envisioning it like a baseball game where someone has handed me a new bat, far improved from the one I retained from High School. With a wink and a nod they've told me to "give this one a try". It feels nice in my hands and I get a satisfying whoosh when I swing it. I was never much of a homerun hitter growing up. Perhaps that changes now.

As always, thanks for reading.

--Russ.

Try as I might

Good Afternoon All:

This post has been brewing for a while. I have made a very important discovery. Try as I might I cannot find the word 'fun' or even a close synonym in the letters of LEUKEMIA. MILK with chocolate added is pretty fun, I suppose. I have fond memories of riding a MULE in the grand canyon. But these aren't synonyms and so I'm left to conclude that there simply isn't any FUN in LEUKEMIA.

My folks have a pool at their home. I've always loved to swim and with two kids getting better and more confident in the pool I would simply love to play with them in the pool. Instead I am relegated to watch because I cannot get my catheter wet. This past weekend it was suggested that I get in the pool just up to my waist. I know me, however, the temptation to splash, squirt, toss my kids would overcome me and now I'd be introducing bacterial risk into an already risky situation. I am certainly happy to watch and was proud to see my son really becoming strong in the water and my daughter conquering the deep end. But, oh, how the experience could have been different.

The weekend it also seemed that each and every time we would be planning to visit someone, or someone visit us, I would spike a fever. Instead of enjoying the company I was left to pop some Tylenol (a MAJOR coup for a patient in my position, I can self dose with pain narcotics easier than I can get physician approval for a fever suppressant) and deal with all that goes with having a fever (chills, etc.) and then the fever breaking (sweating, etc.) before I was really 'presentable' to outsiders.

This week was to be our family's vacation to the beach. The kids look forward to the surf and the rides at night. Marla and I look forward to relaxing a bit and some nice dinners out. This year our easy ten days of FUN turned into four days that will be fun for those that can go only after a lot of complication and discussion.

I've been very aware of a change in my mood recently. I have taken up a favorite perch in our house on the same couch that Bella has claimed as her own. I can see why she likes it. The couch is next to the window but still somewhat central in the house. I find myself sitting there and thinking a lot. Much of what I think about is introspection. Why do I feel the way I feel? How do I get back to 'my own' state of mind?

I have been reminded that my attitude is important. I think there is concern both from my family and from my physicians that I am not 'in the same place" I was when this process began. Part of me would respond that I am not and how could I be? But after some introspection I think I see that my disappointment for what is does not have to color my optimism for the future.

This week I will start a new protocol and I am optimistic. I feel like the doctors have listened to me and found a course that is a change from the traditional chemotherapy. Instead I will be part of a clinical trial of the newer generation of 'targeted' drugs for cancer cells. In theory this drug will bind to a critical spot on a cancer cell and limit its functioning and ability to replicate. It is a different approach, it will be easy to assess its success or failure in the short term, shouldn't beat up my body the way the most recent chemo regimen have, and . . . it just might work.

So for all those who have expressed concern regarding my mood: you were justified. I was wrestling with some things. I believe I have come out of that now, or will soon. I would like to pass along that my medical team is still hopeful that I can have the full, matched-unrelated donor transplant or at the least another option using marrow from one of my parents. I have guaranteed my medical team that if they can get me to a transplant that I will take it the rest of the way to the cure.

So that is where I am leaving it. Being home is a blessing but it also serves as a reminder to all of us at home how things have changed or been sacrificed out of the necessity of the situation.

As always, thanks for reading.

--Russ.

Update

Good Morning all:

I'm typing this post from Hopkins but as an outpatient. As it turns out the decision was made late on Friday to go ahead and release me from the hospital and move me to outpatient care.

I had a bone marrow biopsy Friday that showed a continued presence of leukemia in my marrow, and having ruled out all other infection sources, the doctors were content to pin the fevers on the disease. So, I had to deal with the bad news that the chemo didn't continue to kick the disease out of my body after the preliminary biopsy showed cancer in the marrow. At the same time I had to stifle my enthusiasm for returning home.

The biopsy is truly bad news. Each failed treatment becomes problematic. The doctors are looking at next options and based on some test results that might not be available until next week a decision along these lines will remain on hold. In the meantime I have challenged the Oncology team to do what, in my opinion, they have neglected to do since I relapsed--buy my body some time to recover its counts. It seems that the cancer is recovering faster than the real me, and ultimately crowds out any opportunity for new, healthy marrow to develop. I intend to be dogged on this point. I think I have hit my mark so far as I got a glimmer of recognition when I mentioned this point to my Outpatient Nurse Practitioner this morning.

On the positive end I am home. I've lost weight, a fair amount of muscle I might guess, but I feel good. Over the weekend I successfully assembled Audrey's new bicycle (Mommy and Daddy's gift for her 6th birthday), watched the kids enjoy bikes and skateboards with the neighborhood kids all while coolly sitting under the shade of a tree with Bella sitting calmly at my side. We even joined some neighbors for dinner last night. And best of all I got to tuck my kids into bed each night and spend some quiet moments with Marla.

Of course, none of this is possible as an inpatient and so I feel glad to have this opportunity even if it comes as a result of some distressing news. As I know more about the next treatment I will update here. Also if inspiration strikes on a more philosophical post you can expect to find it here.

As always, thanks for reading.

--Russ.

An update and a silver lining

Good Morning All:

Yesterday morning I was 'set off' by the routine 7:30 visit from the Intern preceding rounds. She greeted me by saying, "Well we're going to try and find out what is causing these fevers today." Immediately two questions flashed in my mind. Sarcastically, and actually never stated was: . . . and so what have you been doing over the past week?

The question I did ask was, "Oh? What are we going to do different today?" Her response astounded me. She replied "Nothing. We'll just monitor you." After a brief discussion where I confirmed that I understood the medical concerns with letting me out of the hospital with a pattern of daily fevers, I added ". . . but there is a definition of insanity." She stumbled through the reference but she actually said it back to me (insanity is doing the same thing over and over and expecting different results). At this point she looked like she really would rather be somewhere else. Since my point clearly had been made I let her go.

She is part of the team that visits about an hour later on rounds. Before the rounding team enters my room they talk about my case outside my room--this is where the seed I planted takes root. When they came in we talked about my fevers, etc. and the Attending Physician, lo and behold, did have a change to make to my medications. He swapped out one medication that can cause fevers with another that does not.

While it is premature to proclaim anything. I've now been fever-free for 24 hours. At times it feels like one has to be a trial lawyer to encourage the doctors to move from a comfort zone. But perhaps I'm cynical, perhaps the Attending Physician had this in mind all along and did not share it with the intern.

Silver Lining Alert:

This last round of chemo (the one I had a little over a month ago) was billed as one that would be difficult on the digestive tract. Without the sordid details, it has performed as sold. I started the regimen on a liquid diet. And digestive 'issues' have made my willingness or the effectiveness of eating somewhat spotty. As a result I have dropped about 30 pounds and have hovered around the weight-loss mark I had set for myself over 15 years ago! For as bad as I can feel with the fevers, I feel great! Of course, I haven't lost all the stuff you'd want to lose. I'm probably a little on the dehydrated side and I'm certain that as I lounge around in the hospital I'm losing muscle mass as well. But I don't think that accounts for all 30 pounds. A harsh way to go about losing weight, but effective.

As always, thanks for reading.

--Russ.

Bingo!

The last Tuesday of every month a volunteer group comes to Hopkins and puts on a little bingo game for the patients who happen to be couped up at the time. I either never crossed paths with this event or was simply unaware it was going on when I was here at other times.

"Bingo?", you ask. Well without getting into the merits and drawbacks of the game itself, lets just say I'm not opposed to a good game of bingo (though it sure is more exciting when you play for cash prizes). This event, of course, were for pretty simple prizes that would mean something to cancer patients or July 4th themed trinkets.

When the announcement went out regarding bingo I thought for a bit and decided to go. After all, I keep lamenting about how bored I am as an inpatient . . .I certainly hadn't played bingo yet.

I meandered out of my room a few minutes before the start and followed another patient with her nurse escort. She clearly had mobility issues, but in this place you come to admire those that continue to press on with what they want to do despite some profound physical limitations or degradations.When I got to the room where they were holding bingo I deftly guided my medicine pole around the table and chairs to take a seat away from the door to make room for all the others who would come. My fellow traveler was helped into a chair at a table right by one of the two doorways into the room.

The blood cancer unit takes up the entire 5th floor of the Weinberg building and is comprised of 4 units labeled A,B,C,D. Each unit contains 15 beds. As far as I know bingo was open to all 4 units. I don't really know what I was expecting in terms of attendance. I probably didn't have enough time to actually contemplate that. But as patients arrived, or more appropriately didn't arrive, I was amazed to find that only 4 patients opted for something new to do.

It started me thinking. Is this a referendum on bingo? Or perhaps I ought to feel thankful to be in my physical condition that such 'activities' are an option for me? Obviously the answer is that it is probably a combination of both. Bingo is a silly, elementary game and admittedly can drone on a bit. But I would bet that there were a few patients that were in no condition to make the simple walk to play bingo, even if they were yearning for something different to do. Everything in perspective . . .

I guess I'll let everyone know that I won twice. Both times I picked out things for the kids--trinkets really, but it will be nice to return home with a peace offering for all they endure as a result of my cancer and the resulting hospitalizations.

I also want to share a somewhat bizarre moment from bingo. During the bingo game the patient I followed to the room was joined by what I would assume was her husband. At one point about halfway through (30 minutes) there was a bit of a commotion coming from where she was seated. I recall now that she seemed nervous about going to bingo in the first place based on the number of reassurances the nurse was giving to her as we walked to the room. At any rate, as I looked over at her it was clear that she wanted nothing more of bingo. She muttered something about feeling paranoid and needed to get up. Her mobility issues made it difficult for her to get out of the folding chairs we were sitting on.

All the while, the person calling out the bingo numbers kept right on going as if nothing was going on. So for the remaining few in the room, we were torn between what was going on with a fellow patient and marking the dots on our bingo cards!

In truth, I'm certain that patients trying to help move other patients is prohibited, so I don't feel too bad that I didn't get up and help. One of the other volunteers did the right thing and ran to get her nurse, who came quickly to assist the patient. Between the nurse and the husband they were able to get her up out of the chair but only after I heard the husband say "you have to push with your legs."

I must be thankful for what has not been taken from me as a result of all this. I can choose well for myself what I want to do (when I have a choice). I remain physically well, despite the disease. And finally, for all the chemicals that have been pumped into my system over the past two years I retain the mental faculties, more or less, that I entered this process with.

Who knew an hour of bingo would yield an opportunity for a bit of introspection and, if you distance yourself, a bit of humor. Glad I went.

As always, thanks for reading.

--Russ.

Not Exactly As Planned

Good Afternoon, All:

Well. Back to inpatient status for me. I had a pretty unpleasant Saturday evening that resulted in a very high temperature and a hospital admission. The biggest disappointment is that Audrey's birthday party starts in about 45 minutes. While I would not have been able to attend the kids party (can you imagine the numbers of germs in a gymnastics center after several birthday parties over the course of the day?), I was looking forward to the family party where my parents and my inlaws would come to our place for dinner and to give Audrey her presents. I was looking forward to doing a good portion of the cooking--we have a huge slab of salmon for the grill (I'm so proud. My 6-year old chose salmon for her birthday meal.) and the fixins for a very nice cold summer soup. Not only will I not be cooking, or eating, what I'm sure will be a very nice meal, I'll be getting something from the Hopkins food service instead. Disappointing to say the least.

There has been no recurrence of the fever that landed me here and there have been many discussions regarding the mix of antibiotics, anti-virals, and anti-fungals resulting in several changes. I, and the doctors, believe that one or more of my previous medicines were causing the fevers. One in particular they would pre-dose me with Tylenol before giving me the IV--my money is on that one as the source of yesterday's fever. Fortunately that was one of the medicines that have been removed from the equation. Here's to hoping that the fever doesn't return, the mix of medicines is a good one, and I get to go home very soon.

Finally, thanks to all who have wished me neutrophils. Please keep them coming as the neutrophils have not yet returned. I am coming up on the stretch of time where perhaps the neutrophils would start making appearances and so I'm hoping to encourage them as much as possible.

As always, thanks for reading.

--Russ.

Father's Day

Good Afternoon All:

First things first--I'd like you all to know that I am writing this post from Hopkins, but while getting antibiotics, etc. as an outpatient. It seems that the whining I did and was the subject of my prior post had results. Specifically, I think Marla was worried, asked my primary oncologist to check in on me who then pushed for me to be released. I have since learned that most people who have gotten the chemo regimen I just received are not released to the outpatient clinic at this time point. While I cannot say that any of this are indicative of some result that I had drawn up when I started whining, it certainly is a nice surprise.

I came home this past week on Thursday and am now back in the habit of coming to the outpatient clinic daily. Those first couple of days were very quiet in the house as Nolan and Audrey had been farmed out to my inlaws since school had drawn to a close and camp hadn't started up yet. That meant that Marla and I had some quiet evenings at home together. That was nice.

It was even nicer when the kids finally came home yesterday. They had learned that I was released from the hospital and I got a very nice hug and kiss from both when they arrived home. This morning I was greeted with "Happy Father's Day!" and more hugs and kisses. While I don't think it was anyone's intent, this serendipitous movement from the ranks of the in-patients made it possible for me to be home with the family on Father's Day. It has already meant more than I thought it would and I know that there is more to come when I return home from Hopkins this evening. My being home also means that I will be 'around' for Audrey's upcoming 6th Birthday--talk about exciting!

Nothing is particularly easy about my being home right now. Besides the daily trip to Hopkins, I am still suffering under the effects of the most recent chemo regimen. My taste buds are all fouled up and I generally have no appetite. I actually lost about 20 pounds at one point but am now slowly gaining them back as I find meal options that both appeal to me and hold some benefit in the form of protein. Just this morning, Marla lamented that she had to try and figure out what to make me for my Father's Day dinner. She commented that she would have typically just done steaks and be done with it. I couldn't help her much since I simply can't know from one meal to the next what will taste good or look or sound appealing. I think I'd like to give steak a try, but it also might be a somewhat expensive failed experiment in feeding a cancer patient.

Anyway, things continue to progress. Though it is a bit of a long shot, we are hoping that the chemo is still active in my body and will ultimately wipe out all the cancerous cells. I'm hoping that the continuing difficulties with mouth sores, taste changes, even some renewed hair loss points to such continued activity. The other two items that are important right now is that I remain infection free and that I finally begin to make my own neutrophils.

Thank you for the response to my prior post. It is always helpful to hear just how many individuals are behind me. I'd like to ask you now to spend your energies 'wishing' me neutrophils. Something tells me that I can't help but grow neutrophils with this kind of support behind me.

Good Morning All:

I have a couple of updates for you regarding my health and perhaps an insight or two into my mental state here at Hopkins.

First of all, I completed my second chemotherapy regimen as of Tuesday last week. This regimen targeted the Myeloid cells in my bone marrow with the aim of wiping out all cancerous cells. I underwent a bone marrow biopsy on Friday. While the full-fledged biopsy results won't be available until Tuesday or Wednesday this week, the initial view under a microscope wasn't what the doctors were hoping for. The doctors reported seeing fledgling cells and that those cells did not appear healthy. This comes from a very small sample as the biopsy did not provide much in the way of marrow, but clearly not the slam dunk results I might have hoped for.

I have since learned that there are transplant options that would be available to me even if I am unable to get cancer-free again. The unfortunate part is that the best transplant option would require me to completely kick the cancer again--something that is proving to be more and more difficult.I also learned this weekend just how much of a whiner I can be.

I have now been couped up at Hopkins for three weeks and many of the entertainment options that saw me through the early days have now begun to lose their luster. As a result I find myself napping more and moving more quickly from activity to activity in an attempt to keep myself occupied.

This past weekend Nolan and Audrey went to Hershey Park and to the annual family reunion. Both are events that I would normally have relished. Of course neither were options for me and, as it turns out, Marla decided to skip both and let my parents take the kids. So Marla visited on both Saturday and Sunday. Clearly, I am nowhere near the host I once was. Pretty much all I did was complain to Marla how bored I was, and when I completely lost any idea of what to do, I simply took a nap while she read a book. This isn't how I intend to greet visitors and Marla made all sorts or excuses for me. Perhaps some of her points were valid but I still can't help but feel bad that all I can find the capacity to accomplish when I get visitors is to complain about how bored I am. I will be looking for new and interesting things to do in the coming days. Something that will keep my attention and perhaps even delay my going to bed at night because I need to get to a good stopping point--so far I haven't found it.

At any rate, I'm going to wind up this post and work on getting my head screwed on straight--Hopefully I can get myself there soon (or get myself released from the hospital) before it starts impacting my outlook and my interactions with the doctors, nurses, and staff here at Hopkins.

As always, thanks for reading.

--Russ.

Good Morning All:

Mostly an update this time around but perhaps there will be items that will shock and astound you as I recap the past week and look ahead.

I believe that I've already detailed the fact that my recent bone marrow biopsy revealed cancer and that this would require a new chemo regimen. I'm now over half-way through that regimen. I was in the middle of the first three days of chemo when I posted last week. I can now safely say that those three days of treatment were the harshest I have experienced. Almost immediately I became fatigued. I got fevers each night during treatment and generally felt awful. The biggest surprise came on Tuesday last week when I learned that where I relapsed with a diagnosis of Acute Lymphoblastic Leukemia, the ALL seemed to have been succesfully treated but when the marrow returned it was being crowded out by another form of leukemia, Acute Mylogenous Leukemia. So the treatment I am receiving is a standard AML treatment.

I was a little taken aback that my entire diagnosis had shifted and the means by which I learned of it was through an off-hand comment during rounds long after the treatment protocol had been settled upon.

I am now roughly in the middle of the second three days of chemo. Thankfully it is a different drug this time around. I would say that I tolerate this one more like I have tolerated past treatments . . . except . . . yesterday afternoon/last night was the worst 12 hours I have spent in the hospital. After a wonderful visit with my wife, kids, parents in the morning into the afternoon I started to develop a fever. The doctors were interested in learning something from this fever and so they did not want to give me Tylenol to break the fever. The result was a 12-hour ordeal where sleep didn't come and I was losing fluid so fast that it felt like I was a grape turning into a raisin.

Between 2:00 and 3:30, several things happened. I lowered the temperature in my room as cold as it would go. The doctor changed an antibiotic in my regimen, and my pleas for hydration were finally answered. By 5:00, the fever was gone.

I often wonder about the sleep-factor in my recovery. Nights like last night are frustrating on many levels, but the disregard of my need for sleep bordered on disturbing. At any rate, this final round of chemo ends tomorrow and then the waiting game begins. Hopefully my counts return and the marrow is clean. The goal, of course is to get to this point and then quickly move into a Bone Marrow Transplant soon thereafter.

As always, thanks for reading.

--Russ.

Hey, I've got a great idea

While growing up the phrase "Hey, I've got a great idea!" ususually preceded some sort of an adventure. A wide variety of grass stains, hitchhikers on our shoelaces, prickerbush scratches and bruises followed us home. At some times those ideas weren't terribly good ones, (smashing or clapping bees between your two ungloved hands comes to mind, eating unripe crabapples, or even ripe crabapples follows quickly behind), and Friday had a series of events that stemmed from me saying something like: "Hey, I've got a great idea!"

Cue whatever music you might use to underscore comedic chaos: The Benny Hill Show theme, circus music, something having to do with Keystone Cops, The Three Stooges, or even the Bad News Bears.

So . . . they put two IVs in my left arm on Thursday before they pulled out the infected catheter. One, which is still in place, is in the area of my wrist sitting below my thumb. The second was placed neatly where most associate blood draws--right there in the crook of the elbow. All was well, medicines were flowing until I went to sleep Thursday night.

At the risk of providing more information than you'd like to hear, I tend to sleep in various positions through the night but an overriding theme seems to be that my left arm is BENT. The effect of all this bending was that the flexible tip of the IV that sticks into the vein was getting crimped. Unless I could find a way to sleep with my arm straight my pump would issue a shrill rhythmic beep and display a warning: reading something like "Patient Line Occluded".

Of course we didn't figure this out right away and there were several curses hurled in a surprisingly dark hospital room as the nurses tried to find any place at all crimped in my lines. My nurse was about to swap out the pump as defective when a thought came to one of us to look at the needle site itself. When I showed the evening nurse (it was the day nurse who placed the IVs) where it was, she said "Oh, I could imagine that the way your arm bends right there that the flexible end of the needle is crimping."

"Perhaps tomorrow we can think about moving the site" I replied. Maybe I should have gone ahead and said: "Hey, I've got a great idea . . ."

But all of that was between Midnight and 3:30 in the morning. There was still sleep to be had and I was determined to make use of it if I could find a way. And where I had determination, my sleeping body had defiance in its soul. I believe that in the 2 hours to 5:30 I set the alarm off three more times. Each time I would carefully put myself into bed (enough slack in the lines so I don't rip them out?, can the nurses reach the pumps?, its cold, why did they make this bed in such a way that the covers don't go higher than my chest?). I would drift mercifully in to a nice drug-enhanced sleep and start the recharging process. Then, my relaxed and comfortable body would put on an ugly sneer (because it was both a malicious act upon myself and completely out of my control) and gently put that left arm right where it wants to be . . .folded in by my chest. A few seconds later the starved pump clicks fervently away and gets no liquid to be moved. Beep, beep, beep. Russ buzzes nurse, nurse arrives, Russ apologizes profusely, nurse sighs and saves her own ears from the incessant high pitched beeping. Rather, rinse, repeat until you get to your normal 5:30 wakeup time and then punt.

So, I did the sort of things that I typically do in the early mornings. I take a leisurely pace to getting ready and mix that with gathering information that I want or need to start my day. As her duties came to a close the night nurse, experienced, and perhaps a bit portly, who had dealt with the headaches was willing to put all of us out the misery being created by the location of this single IV. She took my suggestion when I reiterated it. She nooded her head eagerly and said that's a great idea. In essence, "I know where there are a lot of bees!"

So she went off and got a small kit for removing IVs--really just a few wipes for removing the glue on tape and a gauze pad--and some surgical tape. In no time the offending IV was no longer attached and was unceremoniously dumped in the unsterile field (I won't be explaining this, ask if you must). This nurse and I were united in our desire to remove and replace but we had to be concerned about the bleeding risk! Ahhhh, don't forget that I am a cancer patient. At any time I may be devoid of platelets. You can't just insert the IV elsewhere anyway. So we slowed it down for full and complete thought.

I pointed at possible locations (meaning veins I could see, disregarding through ignorance whether they could tolerate the punishment or be reached without severing limbs) where the IV might go instead. The nurse grabbed her gauze, placed it carefully over the needle and pulled the needle gently out while applying pressure on the gauze to staunch the bleeding. I offered to take over, the confident sign of an experienced patient and so I held my right finger down tightly on the little spot in my left elbow. The nurse continued to get herself together for an IV placement.

Here's where comedic music of choice much reach its fever pitch.

At an appropriate moment according to her, the Nurse slowly lifted the gauze. She and I both noticed the same three things: 1. there was a big bruise developing under the IV site in my elbow, 2. there was a big pool of blood starting to well around my elbow joint, and 3. the amount of saturation of blood on gauze was enough to tell how much longer this gauze pad had before beyond its useful life.

The now sleepy night nurse and I exchanged glances. She spied another packet of gauze and opened it frantically. I cooly pointed out that I've received larger gauze pads for much smaller issues in the past, so there must be some around somewhere. As she gathered herself for a Paul Revere-like gallop for gauze. I dutifully held pressure down on the wound and waited for the nurse's return.

I could hear her footfalls and her calling to other nurses as she ran. I heard "What the. . . there isn't a single gauze pad in this cabinet!" and then, to another nurse "Where can I find size __ gauze pads they filled the whole thing up with gloves?!"

This newly enlisted nurse took up with the wrong cause. "I don't know why they do that when putting back gloves?", she said. I quietly coached my nurse from my room: "if she can help us then redirect her quickly, otherwise move on to the next possible location". My nurse instead asked, "yeah, who puts away the gloves when they come in?"

I saw red. I mean I saw red when I looked down at the 'fresh' gauze that would see me through until my nurse returned. It was still a gauze and somehow the accumulated blood was contained. I might have bought more time if I left well enough alone, but what do you do with gauze that is not taped down? Well, of course, you take a peek. I would be foolish not to take a peek, right?

I heard my nurse start galloping off for another unit. I prayed she didn't need the pharmacy's help because they are not Minute-Man worthy, something on the slow side. But not knowing where she went I turned my attention toward my bleeding elbow. It wasn't a small amount of blood. There was a pool of it cupped in my elbow joint and tendrils had overflowed and were dripping down now from the opposite, angled elbow and onto the floor. I stood up and started for the bathroom for . . . papertowels, perhaps? I got a couple of steps until I realizeed that I was still teathered at this point to the pole that contains my meds, etc. It would need to be unplugged and then the operation would need 2 hands. I quickly glanced at the IV and noticed that most of the needle had been removed from site and gently pushed it forward hoping that I had just put the finger back in the dike.

From the hallway outside my room I hear the footsteps of the night nurse, she's returning just as the amount of blood on the floor of my room is enough to be described as disturbing (but not yet grisly). It really isn't a dangerous loss of blood to this point but I'm tiring of using my right hand as a cup for blood to drip in as I hear the night nurse breathlessly telling the nurses at the station just how far she had to run to get the large gauze pads that she now held and was regaling them with how she braved the near-avalanche of gloves at her first stop. I summoned up my best Monty Python-esque downtrodden serf and said, "uhm . . . be careful when you come in (hint, hint), there's a significant amount of blood on the floor.

Cue close on the comedic music. . .

The night nurse finally strode in claiming to have established outposts in many FLAUs (Four Letter Acronym Units). I prompted her non-verbally to view the blood on my arm, elbow, and floor and she cursed again. She quickly opened the gauze and removed it and the needle in one swift motion. She placed a gauze significant enough for the job on the needle site and folded the extra cloth into squares on top of the original corner she used. Initially she and I both pressed on that gauze for a while. I was trying to help and free up the medical prefessional to save me from bleeding out, I think she was trying to prove that I might be the reason I was bleeeding out in the first place. At any rate, we both pressed. After some time passed she got some alcohol wipes and started cleaning up my arm, elbow, and the floor. Only then did she get a new gauze pad and some tape. And we taped that gauze pad down like you wouldn't believe.

I looked at the night nurse and said, "Well after that you are getting to the end of your shift? Would you like to take an attempt at replacing it before you go?" I think her initial acquiessence was ingenuine--she didn't particularly look confident--and in truth I didn't see her again until the day shift nurse, the same from yesterday, and much earlier than ever before began her dealings with me. The process to actually remove and replace the single IV dodged a Spinal Tap and an Echo Cardiogram, and was not actually carried out by the day shift nurse--she stuck me twice with no results to show for it, save more gauze and tape appropriately applied. The day nurse summoned the "guru" on the 5th floor and the guru brought her apprentice (?) and a sonogram machine to locate good veins. The guru studied my arms (I had long since offered to move everything to my dominant hand/arm if they thought it would work) and settled on two different spots one a spot in my triceps area and another a spot in my left hand. These veins did in the expert but the apprentice didn't seemed daunted by the challenge yet.

The apprentice snapped up the sonogram wand, found her target, got the appopriate gauge needle and jabbed it uncomfortably fast and certainly deeper than the expert or the kindly day nurse ever had. She he had bloodflow.

So when I typed the the most recent post it was with the single IV placed down near the thumb, and a big old patch in the middle of my elbow on the same arm--not really an IV, but it was supposed to be one. It would now count one of 6 recently abandoned IV sites in my arms.

Despite that ordeal I am now back to the lines in my neck. I spoke up when it became clear that the central line was going to be the path that we'd take. The doctors did a good job of hearing the complaints and placing the line in a more comfortable and workable spot. The good thing is these lines get to be associated only with the tough times in the hospital as they are not conducive for going home and will be replaced with something more durable and comfortable when the time is right. Thank goodness.

The next round of chemo started yesterday . . . wish me luck.

As always, thanks for reading:

--Russ.

Ah. There's a tugboat now.

When I look out of my hospital window taking great care to avoid the almost-finished parking garage, and use the squat, but-still-taller-than-most red-brick apartmentment building and the taller structures of the aforementioned parking garage as a frame. I actually have a quite scenic view of Baltimore Harbor (Huh, a tug pulling a tanker! Haven't seen that yet). My view looks over the roofs of some rowhouses and federal style buildings that all seem to be in good shape, lacking the wear-and-tear you find in parts of the city that are, as I look, just one block over. My view of this section of the city seems to indicate that these buildings face each other over some sort of plaza or walkway though it is possible that there is a street there and the traffic is simply hidden from me. This plaza runs from almost the lower left hand corner of my "frame" to about halfway up the right side. There are treetops that peek beyond the roofs of the rowhouses to the right, but they do not seem to be terribly mature and so I might guess that these buildings are not terribly old.

Beyond these buildings are the steeples of two churches, the closest could be of any denomination though I might guess from its size and relative grandeur it is a Catholic Church. It has weatherd tan stone walls and octagonal steeple with a smallish (by comparison) gold cross at the top. The roofs of both the church-proper and the steeple appear to be slate, though I suspect much might appear to be slate when it has been well-drenched in evening rains. The second church building (if it is one at all, now that I've stared at it quite a bit) is placed between the Catholic Church and the harbor. It is more of a simple red building with what I believe is a bell tower on top. What I might have initially thought was the steeple for this church might actually be an adornment of the front of the first church.

It is with all this that 1/2 of my "frame" has been filled. But the interesting things happen on the harbor--a zigzag of water for the harbor around what must be docks or fortuitous juts of land sticking out into it. Add to the picture an appropriate amount of background and sky (I'll keep the bridge and mentally erase the smokestacks). The helicoptors that buzz along that sky and sometime fly right toward me are also a nice source of amusement (when one doesn't think about why helicoptors come to Hopkins).

I've woken to the sound of pump alarm bells too often this AM to try to sleep any longer and so here I am posting. And reflecting on a pretty trying week. In my last post I mentioned, and even made light of, the fevers I was having. Well, a couple turned into several days in a row, with fever coming and going only with the administration of Tylenol. Finally, on Tuesday morning this week I woke up with a fever. One I did not know about before going to bed (for the astute readers) and it had spiked to 103.8 degrees. I was admitted at Hopkins in time for rounds that morning. These fevers, given their intensity, had been pegged for an infection of some sort but . . . all the king's men and all the king's horses couldn't get Russ out of bed and into his regular discourses.

And so we were caught in this loop. Everyone would look at me and my symptoms and say, "he's got an infection . . . somewhere". Everyone would look at the roster of medication I was taking and say, "We've got him covered for viral, bacterial, or fungal infections".

As it turns out, a blood culture taken 5 days ago has now grown out and shows a seemingly signficant infection (given Marla's reaction when I reiterated what little I knew at that point) contained in the lines of my catheter. Easy to treat--yank the catheter out. And so we did, yesterday. But I'm still getting the meds and the fluids and so that means I now have two (stay tuned for tomorrows post where I explain that this statement isn't exactly true) traditional IV ports in my left arm. I am pleased to report that I'm closing in on 24 hours without a fever, I also saw a return in my appetite last night, and I awoke without a headache for the first time in about a week.

But probably the most significant news came during the hunt for the source of the fevers. As various tests were run and crossed off the list, the question came up that perhaps my fever was a result of a recurrence of leukemia in the marrow. To date, even what must be only a few weeks ago, all marrow checks had been clean. But, running out of options they again did a bone marrow biopsy. I learned on Wednesday afternoon that there were leukemic cells in my marrow. In essence, this means that my first attempt at remission has not been successful. And now we are full-steam toward a second attempt. The real handwringing comes with the knowledge that each subsequent attempt comes with less and less chance of achieving remission. Don't ask me numbers. I've forgotten them. However, I don't believe they depicted staggering odds against achieving remission on a second attempt. I choose to remain hopeful.

The comforting news is that the bone marrow administrative processes are behind us. This means that when I achieve remission I will be able to be placed directly into the transplant routine and hopefully we could transplant within days, not weeks. So it seems I will be here at Hopkins for a bit as I believe all of these processes may well bleed (pun intended) into one another. If that is the case, I may have this nice view to myself for a number of weeks while getting chemo and recovering. It is a good one for sitting and thinking. Sitting and thinking is good for blogging. Beware.

As always, thanks for reading:

--Russ.

Dangerous Dichotomy

Good Morning All:

Figured I'd write today and let you know that I'm out of the hospital but I continue to deal with these fevers. To date, I have not had an infection that anyone can find and so the fevers are labeled neutropenic fevers which is doctor-ese for fever-of-unknown-origin.

A couple of nights ago I played a somewhat dangerous game that I thought perhaps might make for interesting reading--you be the judge.

There is one well known, often preached, unflagging rule that the blood cancer patient must live by: take your temperature at home, and if the thermometer ever reads greater than 100.4 you must call the on-call physician. Of course I have done this a few times and the pattern is the same. Since I have no immune system right now, and discretion is the better part of valor, the doctor admits me to the hospital almost as a matter of course. Once in the hospital my fever may, or may not, be reproduced but it is an unwritten rule that I will be monitored to ensure that I am fever-free for 48 hours before I will be released.

After this most recent hospitalization I was put on a pretty intense regimen of antibiotics, etc. and was told the visit the outpatient clinic daily. Wednesday was my first such visit and it was roughly the same as any other visit to the clinic except that they were working in the the administration of 3 IV antibiotics during the appointment.

I didn't feel great going home. I was still very tired from my hospital stay and chalked much of how I felt up to a lack of sleep. Instead of household chores I just curled up on the couch and dozed in and out waiting for Marla to come home with Audrey (Nolan had baseball practice). As the evening went on it became clear that I had a fever. I took my temperature after dinner and it was well beyond the 100.4 threshold. I opted not to call.

But its the rule, right? What if it was something to be worried about? Of course these thoughts went through my head but I also know this: If I take the same set of complaints (fever, chills) with me to the outpatient clinic I am much less likely to get admitted to the hospital. Of course, I wrestled with all the reasons that I should follow THE RULE. I weighed those reasons agains the almost assured return trip to the hospital and decided that I could wait until morning.

Ultimately it all comes down to what I have been rewarded for. So far, adherence to THE RULE has only ever garnered me a hospital stay. These stays cause disruption at home, are expensive, boring, and often fruitless when it comes to finding an infection source. On the other hand, by selectively ignoring THE RULE I have been rewarded by effectively avoiding a hospital stay for a neutropenic fever.

I recognize, of course, that this will not always work in my favor. That failing to follow doctor's orders could have very serious consequences. However, I feel like "they" have forced my hand to at least take into account a number of factors before I give in a call and thereby admit myself to the hospital.

I'm certain that this is not what the team of doctors intend a patient to do but it is what they have established through their actions. The outpatient clinic does a good job of taking into account the patient's desire to stay home and get better at the same time. The Doctors seem to over rely on the inpatient hospital admission and the rules of thum that keep the patient away from family a minimum of two days. I think the doctors could learn much from the outpatient clinic and the focs on the patient's needs and desires. They might find that the patient is more apt to follow the doctor's orders if they did.

As always, thanks for reading.

--Russ.

Triumph and Tribulation

Good Morning All:

Well, as the title I have chosen would indicate, I have some good news and some bad news.

I'll start with the bad news as I don't think it is all that bad. I'm typing this post from the hospital. I was admitted last night after I spiked a fever and had some odd pain in my back for a good portion of the day. The fever has since abated and the pain is not as severe as it initially was. The CAT Scan that I got at 3:30 AM apparently was 'boring' (Would you believe that was the doctor's actual words?!). What I don't know is how long I'll be here. I'm hoping that if I'm fever-free for 24 hours they'll cut me loose tomorrow, but no one has said any such thing to me.

These 'blips' are at times frustrating and/or disconcerting. They can be scary as the risk of infection is the greatest danger that I currently face. So every time we go through this there is fair amount of worry and trepidation as I leave the house and plop myself into the hospital: "What is this? Do I have an infection? Could it be serious?" Until I get to the hospital I cannot know and that, of course, is why I make the phone call to the on call doctor instead of ignoring the fever.

The good news comes in form of an update on the bone marrow transplant front. On my last update I let everyone know that I had at least one perfect match. As it turns out, the original 18 10-out-of-10 matches yielded 4 perfect matches when held up to the light of the more strict HLA matching. From there the four matches have been prioritized based on more ancillary criteria and are in the process of being contacted and coordinated with for a bone marrow donation. I have been told that they have been provided timeframes that would enable a transplant for me on either June 9th or June 16th.

I am very fortunate to have four matches. Many individuals in the same circumstance as I have one, or even none. I have 1a, b, c and d. This, of course is exciting news. It means that the treatment I need is very probable to occur in the form that has the greatest chances of success and fewest complications (of those options available to me). That is a relief.

It also means that I've got an upcoming month-long hospitalization that is becoming much more 'real'. I am not at all looking forward to being away from the family for that sort of duration again. As Marla is quick to point out, however, if the transplant is necessary, then the sooner we get started the sooner the hospitalization finishes. I suppose that is a better way of looking at it, but I find it difficult to bring myself around to that angle very often--I get stuck at having to live in the hospital for a month separated from family and friends.

I guess that is about it for now. As always, thanks for reading.

--Russ.

Update and Happy Mother's Day

Happy Weekend All:

For all my lamenting about 'forced retirement', I am happy for the weekends as well. The outpatient clinic does what they can to give patients the weekend 'off' and I am no exception. But during the week I am trying to work what hours I can and still make the trip to Hopkins a minimum of three times per week. I usually get to Hopkins by 10:00 or a little after for my 10:30 appointment. This requires me to leave my house by about 8:30. I drive to my parent's house in Silver Spring and they take me (by rule I have to be driven to Hopkins) the rest of the way. Typically I am not home until 5:00 or even later. Last night I didn't get home until closer to 8:00 but that was partly because I was leaving Hopkins around my family's dinner time so my parents and I did carry-out at their place before I drove the rest of the way home. This being a patient is at least a close to a full time job in, and of, itself. So I like the weekends too, where I can 'relax'.

So, I have already helped Nolan with a big chunk of major biographical report this morning, started the laundry focusing on the loads that will ensure that Nolan's uniform is ready for tomorrow's baseball game, done some minor plumbing by replacing the flusher handle (nothing with the 'dirty' part of the toilet, though some might argue any part of the toilet is perhaps too dirty for someone with no immune system to touch), and with Audrey's help have started picking up around the house to get it ready for the little Mother's Day shindig that we'll have here around Nolan's baseball game. I'm taking a quick breather as the last bits of my antibiotics drip through my catheter and figured I'm make a quick post.

The rest of this afternoon I will continue to clean and do laundry. I'll also pay the bills and do some work wiping clean the hard drive on a computer that we intend to donate to Audrey and Nolan's school. I am limited in how I can help, but truly, this level of activity is 'relaxing' to me. While on the face it sounds nice to lounge around in bed or in a recliner all day, at Hopkins it is by no means relaxing and sometimes it can be downright tiring.

Just a quick update on the search for a bone marrow donor. I believe that when I last posted on this topic I indicated that a very promising number of 10-out-of-10 matches had been found. The second, more detailed level of genetic matching is well underway on those candidates and there has been some good news. At least one of those matches has been determined to be a hematological twin to me. It wasn't really presented that way to me, of course, but from what I can understand it seems like this one individual matches in every way that the doctor's could hope for. It also sounded at the time that there could be a couple of other such 'twins' but that they were a day or two away from having those confirmed as well. Needless to say it is a relief that we're now talking about rank ordering matches instead of wondering if such matches are out there. My understanding is that the process of actually contacting these donors to see if they are available and still eligible to donate has begun or will begin soon. The doctors continue to keep the transplant options open. The choice among the options depend on several factors including when my counts return (also a determinant on if/when I return to Hopkins as an in-patient for a second round of chemo), the presence or absence of leukemia, and the final speed and success with which the Match-Unrelated Donorship (MUD) can be arranged.

Finally, I'd like to say Happy Mother's Day to the Moms. Of particular note (since this is MY forum) I'd like to single out my mom, Linda French; my wife and the mother of my kids, Marla French; my mother-in-law, Lannie Potts; my cousin and brand new mom, Jennifer Brown; and my grandmother, Geraldine Shelley. And given the subject matter of this blog I feel compelled to extend the same warm wishes to some other "mothers" (not actually my mother, but in some cases mothers of others--I just finished reading a Dr. Seuss book with Audrey!) who have been pretty regular in checking in and/or sending well wishes. They include: coworkers Gloria Loudermilk and Marie Slaughter (and the rest of the SPS Office), Jan Pallas Dudley (and the rest of the Recruitment Services group), Venitia Lamour (and the cancer support group at work that I haven't gotten a chance to meet with!), and Ronie Nieva (fellow Hopkins goer and blogger), Terri Annis, Martha Berlin, and Robin Stearn (and the rest of the Field HR team); friends Wendy Bailey, Denise Conway, Stephanie Reeve, and Michele Allan for keeping Marla sane and for pitching in, the moms of the baseball team for their support of the team and for the support they've shown me, and the many "moms" that have checked in from Ascension (Angela Hight-Walker and Sue Stief come to mind, Reverand Randy: do you mind being a mom?), Hughes (Rebecca Olmstead, certainly), Candlewood (Mrs. Bednar, Ornstein, Russell, Stayeas, and Zador for their support of Nolan and Audrey), and the many "moms" that support Marla daily at Human Genome Sciences, many of whom I have met a few times but couldn't reliably be counted on to come up with all the names.

Happy Mother's Day, and as always, thanks for reading.

--Russ.

Some just try harder

There is a series of commercials that have been produced for Avis Car Rental where the customer would be mistreated in some awful, yet humorous way and the announcer would say something to the effect of, "ever get the feeling that they stopped trying?" By comparison there is a scene where a customer is warmly greeted and taken care of by the Avis Customer Service Rep. The viewer is then left with Avis' slogan, "We try harder."

I've always enjoyed these commercials. They exemplify the kind of positive and frighteningly negative customer service encounters we have all had as we go grocery shopping, fly on an airline, or yes, even rent a car. "There is more truth said in jest . . ." as the saying goes.

The "We try harder" part is perhaps a bit hokey and I am certain that the annals of car rental lore are litttered with customers who would beg to differ on Avis' assertion based on their own personal experience. But it is an interesting statement to put yourself, as a company, on the hook for and I commend Avis for trying. What they are selling, in truth, is the individual effort given by individual employees on each transaction--a tall order. Anyone who has supervised individuals would certainly balk at guaranteeing such a thing.

As an HR professional I really enjoy observing people in their jobs. Do they enjoy it? Does it seem like a good fit, or are they collecting a paycheck? What is behind the flip comments about the supervisor? I naturally get a chance to endulge this penchant of mine while at Hopkins. I get to watch Nurses, Clinical Assistants, Support Assistants, and other staffmembers of the hospital perform their duties as they relate to me and others.

I'm happy to report that these professionals seem to be like everyone else. Some are motivated by what they do or at least perform their duties with enough zeal and vigor to convince me. Others, meander through the day doing enough to remain employed a little longer and little else.

Sometimes we think of healthcare professionals as automatically being intrinsically motivated to do what they do. I'm here to tell you that there are plenty who are. For example, there is the Clinical Assistant who went well beyond her duties of taking vital signs and collecting samples of various types to learn about wound care so that she could better help cancer patients heal from surgeries, or other sores they might acquire during treatment. She personally took the challenge of rehabilitating the skin on my neck that had been iritated and even removed from the adhesives when I had a central line placed in my neck. After a few days of her care my neck didn't even look sore.

Or the snack cart attendant . . . the old one used to ask whether the patients would like a snack from the snack cart as she sprinted through the outpatient unit. You could call after her if you were interested but it was just as likely that she would be gone before you could get the words out and you had to try guess what she had. The new attendant that has been around for just a couple of weeks slowly brings the snacks around on a try, shows you what he has, and asks each individual patient if they would like a snack. I don't know what the first one gained in her speed but I'm certain she didn't give out many snacks. Even though I don't often take a snack I appreciate the new attendant more--I feel taken care of.

Nurses aren't immune. I might think of them as highly skilled professionals but perceptions of their skill should not be confused with the very evident dichotomy that some work for the patient and others work because they have to, nursing the chosen profession. For every nurse that knocks themselves out to get my transfusions done in rapid order, there is another who gives me a cup of pills to swallow and instructs my caregiver to get up and go get the water to wash them down.

During one conversation while I was an inpatient, one fairly new nurse confessed to me that this was her first real nursing job and that she was about 5 months into it. She happened to have been assigned to me 3 days in a row and I asked her a lot about her career choice, her job search, etc. She even admitted at different points to being nervous with the amount of responsibility patient care requires and a desire for her patients to think that she's a good nurse. While she was not the most skilled or knowledgeable nurse I had during this time she may have been among the best--she tried harder, and I told her so.

Having spent a good portion of my career matching people to positions, I have come to realize that making a good match requires no small amount of effort. I have also learned that taking shortcuts (AKA, not trying harder) proves counterproductive in the long run as I work to replace the previous poor hire. I have also come to recognize when a good match has been made--and I have to say that I think Avis has it right. When a good match between person and position has been made it looks like they just try harder. Conversely, a poor match of person and position seems to fall prey to over-reliance on beaurocracy, dodging of responsibility, or just a general malaise in the performance of job duties--all things that may well be the object of humor in the Avis commercials.

So, as I walk out of Hopkins for today I will reflect on the care I've been given and the interactions I've had. A welcoming and fast CA who has been on the job for decades (compared to the one I had on Monday that started grousing and pointing out to me the coworkers that 'spy' on her), a nurse who is clearly knowledgeable but takes forever to get around to her patients, and even the parking attendant who mumbles a greeting, whose eyes seem to always be at half mast, and who takes a surprisingly long time to punch a few buttons and to scan a parking ticket. Who of these were good hires, and who are just individuals in a job? I think I can spot 'em a mile away.

Each of these individuals are related to my care as a cancer patient. Some care and exemplify this by trying harder to make things better. Others clearly do not. I think the balance of those interactions lead a patient to a summation of their experience and an assessment of the care they have received. Hospitals, Hopkins included, might do well to adopt Avis' slogan and strive to back it up. Heh! I wonder if the recruiters at Hopkins are ready for THAT challenge--they'd have to be the first to try harder!

As always, thanks for reading,

--Russ.

PS - recent tests continue to show an absence of leukemia and absolutely no immune system. As of yesterday I was being told that a Bone Marrow Transplant might take place in 4 - 8 weeks with several factors coming into play in how this shakes out. Certainly I'll keep everyone posted as this process develops further.

Update

Good evening all:

The kids are enjoying a late night of movie watching and I figured now was about as good of a time as any to send out a quick update. The past week went much more smoothly than last--thank goodness. I still need transfusions about every other day, but I was able to have 'off' on Tuesday and Thursday. To celebrate I worked 8 hours from home both days!

I've started to get a little more brazen when it comes to my son's baseball team. The parents are having fun watching me have difficulty staying away during the games. I gave in and actuallly participated in practice on Thursday evening. This is happening with the blessing from the care team at Hopkins (or at least they haven't openly condemned it). Being able to participate in some way makes all the difference.

Of course there is peril in all this--I have no white blood cells and, if Monday's bone marrow biopsy is any indication, I actually don't have much in the way of marrow still. No one on the care team seems terribly concerned and so I suppose they are simply looking at my body's willingness to be a blank canvas as a positive sign for the success of the bone marrow transplant (or at least that is how I like to look at it). You should see me approach one my 9-year old players to give them a high five for an inspired pitching performance and make them stop about 10 feet away and answer whether or not they have a cold.

I'm sure that everyone is getting a little bored of the update posts. I promise that I have something a little more 'substantial' brewing in my head. For those who are paying attention, you'll be happy to hear that I am not talking about the minor sinus infection that had the doctors a little worried a bit ago. I'm talking about an observation that I have made over time that I've been wanting to describe. Perhaps tomorrow there will be time to type it out.

As always, thanks for reading.

--Russ.

Type and (double) Cross

Good afternoon all:

Just writing while getting the last of what has seemed to be an endless stream of transfusions. The platelets and red blood cells continue to dip and I alternately make and lose white blood cells. I still have no immune system to speak of, so the risk of infection continues for me.

I have been able to get to Nolan's baseball games which has been fun. I even found a way to position myself at one of the fields so as to be away from everyone and still in a prime spot to 'coach'. That was quite enjoyable.

The appointments at Hopkins this week were both longer and more frequent than is typical. My appointments are routinely scheduled for 10:30 and I had appointments this week on Monday, Wednesday, Thursday, and now Friday. They have been trying to get me on an every-other-day schedule but this week it proved difficult. And if I have anyone or anything to blame it is the "Type and Cross".

The "Type and Cross" is a blood test that they perform every so often. It serves as a double check on your blood type so that if/when you need blood products (platelets, red blood cells in my case) they have done what they can to verify that they are giving you the correct blood type--very important. Two things have always struck me as odd regarding the 'Type and Cross'. First, the results take significantly longer to process than any of the rest of the tests that get routinely run. I can't figure out why this is. I can remember testing my blood type in a science lab in High School (or maybe it was college). This was accomplished during normal class time and without fancy gadgetry. How is it that what I could accomplish (accurately, I might add) within a one hour period as a half-interested student, takes an organization like Johns Hopkins with all the technology, the best people, 3 or more hours to complete.

The second conundrum with the 'Type and Cross' is that its results are only good for a few days. After so many days have elapsed the blood bank will act as if they do not know what my blood type is and refuse to issue me blood products until a "Type and Cross" is performed. During my first go-around with chemotherapy I learned that the reason behind this is that individuals who get a bone marrow transplant (as I am) may well come away with a different blood type--that of their donor to be precise. Of course I was wondering what that information wasn't in a database somewhere.

The time cost of having your "Type and Cross" elapse is easily two hours and is more likley to be three or more hours under certain circumstances This is a lesson one learns quickly and during my first stint with the clinic I soon learned to keep track of when my last "Type and Cross" was and to press for one if I thought it was set to expire.

But, time has elapsed and it does not seem that all the tricks came back to me.

I was transfused Monday with platelets and red blood cells and was told that I could skip coming in on Tuesday The process took forever because the blood products could not be issued until a 'Type and Cross" had been completed. When I came in on Wednesday it turned out that I hadn't dropped enough to warrant transfusions and was sent home once the blood test results were known--a pleasant surprise. Before I left, the nurse astutely grabbed a late "Type and Cross" blood sample so that it would be analyzed and my records updated for when I came in next--the original plan was for Friday. But two things happened.

First, the logic of sending me home without a transfusion was fine, but my counts would not be at acceptable levels for 48 hours. As a result I received a call on the way home on Monday telling me that I'd have an appointment on Thursday with the goal of giving me the neceessary transfustions to allow me to skip coming in on Friday. Second, as I learned when I returned to the clinic on Thursday, an error was made on the ordering instructions contained on the label on the vial of blood for the "Type and Cross". As a result the test was halted and my "Type and Cross" data was now out of date.

So, the "Type and Cross" had to be ordered when I came in Thursday morning. Another delay followed by significant transfusions. It is hard to imagine that one can get tired sitting in a hospital bed all day but I will tell you that I feel exhausted after spending 6, or 7, or 8 hours sitting around at Hopkins sandwiched between a reasonable amount of car travel just to get there. And then to learn that the platelet transfusion (they take a post-transfusion blood test to guage the results) hadn't been terribly effective and that I would need to return on Friday for more platelets and red blood cells anyway . . .sigh. I have now re-learned my earlier lesson: never let the "Type and Cross" elapse--I'll add that to my mental checklist of things to monitor while I am in the clinic.

I know most would agree that my 'job' right now is to get better. I think I'm off to a good start, actually. I just wish that this job didn't come with days like these. It's been a long week and I'm hoping that I'll be able to get some 'time off' this weekend.

As always, thanks for reading.

--Russ.

Overdue Update

Good Evening All:

Just writing a quick update while waiting for the Overtime session of the Caps game to begin.

Sorry that it has taken me a while to get an update out to everyone. I went into this past week expecting that I would be going to Hopkins daily as an outpatient. That pretty well held true once I was released on Monday. Tuesday, Wednesday, Thursday I had appointments at Hopkins but a funny think happened on the way to the outpatient clinic:

A part of the treatment process that I always thought was running on autopilot surprised me. The transfusions, particularly the platelet transfusions, had become so old hat, so routine, that I was completely caught off guard to learn that there were still tricks to be employed. Specifically, the crafty Dr. Platelet (the name given to a team of doctors that manage the platelet transfusion process) seems to have effectiveely addressed what had become a fairly disconcerting problem where my platelets were dropping precipitously each day and the transfusions that I was receiving to get me out of bleeding danger were becoming less, and less effective. Apparently all along the donors of the platelets and the results of those transfusions were being tracked. On Tuesday a donor that had been identified as a good platelet match for me was brought in to donate platelets. I received those platelets on Wednesday and got the nice news that the blood draw following that transfusion showed an increase in my platelet levels that I had not seen in quite some time.

Thursday I returned to the clinic and learned that overnight my body had not launched an assault on the platelets as it had in the past. As a result, I practically retained the level of platelets I went home with! And even better, I was told I could skip coming in on Friday.

I returned today and the platelets are still holding steady. My red blood cells are above the threshold for receiving a transfusion (but falling very slowly), and my white blood cells are still almost non-existent (and there is not a sign of the neutrophils that we saw about a week ago). So, I get to skip the trip to Hopkins tomorrow as well!

What does all this mean? Well, most of all it means that I get to take in Nolan's second baseball game of the season. I managed to get to his game Wednesday evening. If I can't coach, at least seeing the kids play is the next best thing. Otherwise, it seems to signal a bit more stability--a very welcome development.

In addition, I have an update on the bone marrow transplant front. First, I'd like to apologize. While the process of receiving chemotherapy and transfusions are well known to me by this time, I am navigating this BMT process for the first time and there are many questions that I have been asked for which I simply don't have a certain answer. Probably the most common question I have received recently relates to the process of finding a donor. We received news on that front during the week and I have spent a bit of time this week trying to put it into context a bit.

During the week I was told that 15 ten-out-of-ten matches had been found. This means that of the 10 alleles that have been found to impact the success of a transplant, 15 registered donors have been found to match me on all 10. Knowing that there is another level of genetic testing to refine the level of match and the process of actually arranging for any one of these strangers to agree to donate their marrow to me, it was not clear whether 15 was a good starting point or woefully inadequate or somewhere in between. Based on a conversation I had with a source I trust implicitly on this and other cancer-related topics, 5 ten-out-of-ten matches would be a good start. As a result I have to feel very good about having match that my doctors, and by extension, I have confidence in.

Well, the Caps have won, and I think I might work on catching up on some sleep.

As always, thanks for reading.

---Russ.

The tools of ignorance, indeed.

Good Afternoon All:

Sorry for the delay in writing the next post. It has been an eventful few days with my triumphant return home and a disappointing return to Hopkins after my body temperature crept just beyond the magic 100.4 (38 degrees celsius). I actually started writing this post from Hopkins but went home before I could finish. Warning: its a long one.

The vast majority of people who read my blogs know of my love for baseball and that I have continued to play the sport into adulthood though many may not know my position of choice. Ever since I figured out that my best chance to make the baseball team in High School was to learn to play catcher, I have declared to anyone who would listen that there is no better position on the field. When people learn of this they ask some pretty routine questions: "don't you get tired? and "isn't it bad for your knees?" are the most common.

Even baseball writers, pundits, and observers have differing takes on catching. As quickly as one announcer will call catcher one of the two 'thinking' positions on the field, another will label his gear (the helmet and mask, chest protector, shin guards and padded glove) 'the tools of ignorance'. One may call the catcher the captain of the defense and another will mockingly point out that he's the only player that is facing the wrong direction and the only player that doesn't even stand in fair territory.

Make no mistake, catching in baseball is not like beer league softball. It requires exertion and stamina with a measure of quickness of reflexes and thought. There is a reason why many players do not want to play catcher--it is toughand grimy. But decades of catching has left me with quite a bit. I have had a chance to reflect upon much of this while watching the early season baseball games.

Baseball, as a sport, requires that a player be able to manage his/her emotions. A player that remains excited for a previous good play or hit will often be humbled at their next opportunity. Similarly, a player that does not have faculty for 'forgetting' the bad plays or at bats are doomed to further failures. It is so true that it has become a sporting cliche--'you can't get too high or too low'.

When catching, your next opportunity comes with the next pitch--simply not enough time to stew over things or plot revenge. The catcher needs to get the pitcher settled, watch the batter, call the pitch that he believes will fool the batter, catch the ball and get it back to the pitcher. Lather, rinse, repeat--100+ times a game.

This has application in my current situation. I have learned to enjoy the good news when it comes my way but not to lose vigilance for the hand-washing that keeps the germs at bay. As a catcher I may enjoy the strikeout that my pitcher and I managed to orchestrate, but I cannot forget that there is still an out to get and runners on 1st and 3rd.

I also don't get too down when things don't seem to be going smoothly. Sulking, wallowing in self-pity, and yes guilt, all beget more misery. The ball in the dirt got by me and the runner on third scored. My fault. But the next pitch is coming in. If I don't catch this one the runner that advanced to second will be standing on third. A ball player's memory has to be short. How short is determined by when that next opportunity to perform comes--if I'm standing in the outfield it might be a while. Behind the plate, it is probably less than a minute.

I also believe that catching has tought me physical toughness. People talk about 'tough' individuals as if they inherited the 'toughness' gene. And maybe such a thing exists. I don't believe that it existed for me--I think I learned it when I started catching. The physicality of the position simply won't allow for someone to play it who cannot be tough. Squatting through long innings, allowing pitches that are thrown in the dirt to carrom off of your body in the name of making sure they don't get back to the backstop, inhaling dust for hours on a sweltering June afternoon are all parts of playing catcher that one needs to learn to enjoy. No one counts the number of throws a catcher makes as they count pitches for pitchers, yet for just about every pitch that comes in a throw goes back out to the pitcher. Foul balls tick off of a bat and hit you who-knows-where--I've had my throwing arm go limp for a couple of innings after a foul ball hit me just-so in the shoulder. Home plate is the only place where the fielder can block the runner from touching the base, as a result it is also the only place where a runner can charge through the fielder to knock him off his feet and the ball from his glove. All the while you are expected to think about what how your pitcher is throwing, what the current batter has done in previous at bats, and where the other players on defense are positioned. And there still has to be enough energy to swing the bat and run the bases when it is your turn . . . there is no better way to spend a spring afternoon! But the team counts on the catcher and so the bumps, bruises, turned ankles, sore knees/shoulders/back, are part of what you deal with and keep playing.

Enter cancer and some of the more difficult parts: spinal taps, bone marrow biopsies, and month-long hospital stays (oh my). I don't think that I could grunt and bear them for as long as I have had I never taken up catching. More than once now I have been asked during a 'procedure' if I am ok and more than once it has reminded me that the exact same question is asked of a catcher after a foul ball has hit him squarely in the face mask. As a patient I will say that I am OK--Yes it hurt, we all knew it would hurt but it is what I must endure to get better. As a catcher I will nod to indicate that I'm OK--often taking a shot off the mask truly does not hurt but can leave you feeling a bit dazed. The point is, whether it hurt or not is not the important question. What is important is whether you can continue on. Toughness allows you to continue on. I don't know how many of these cancer-related hardships I would have been equipped to tolerate had I not learned to tolerate quite a bit already. I can only imagine what quittingat this point would cost me.

Unfortunately I won't get to wear the catcher's gear this spring or the coming fall. But, in some respects I guess I always have it on.

As always, thanks for reading.

--Russ.

I'm safe

Good evening all:

I just figured with my earlier announcement that I was returning home many of you might worry about my previous post where I declared that I would clip my nails. I am happy to report that I clipped my nails and, as far as I can tell, I have managed to survive the ordeal.

--Russ.

My 100th Post!

Good Afternoon all:

As I logged in to type this out I noticed that I have made 99 posts in the past. If I'm doing my math correctly that makes this the 100th post. Certainly, I would have rather stopped at whatever number it was when I signed off. But, since I needed to crank them back up again I guess it is a milestone worth celebrating.

That celebration, however, pales to the one that I'm having when I write that I am going home today! I still don't have an immune system to speak of. My platelet counts are crashing almost daily so I have an almost daily need for transfusions. I'll be returning to Hopkins on a daily basis for monitoring and any further transfusions. And while all of that might fill me with trepidation, I can't help but feel relieved that I will be able to eat dinner with Marla, Nolan and Audrey each night, help the kids with their homework, tuck them into bed . . .a month of just missing that has been extremely difficult.

You know my propensity for writing more. I'd love to write more but that will have to wait for the next post--I need to pack.

As always, thanks for reading.

--Russ.

Update

Good Afternoon All:

I realize that if I had been following my normal pattern I would have posted this update yesterday. You'll have to pardon me. I found the third benefit of being a cancer patient (The first is that it gets your priorities straight, the second is that you can eat whatever you want and everyone thinks its wonderful) and so yesterday afternoon/evening and I was busy indulging. If you know me you know of my love for baseball-yesterday I was in bliss as the baseball season kicked off, I watched all or parts (in some cases, very small parts) of 6 games yesterday! The only thing that would have made it better was if I were at home in front of the big screen.

Anyway, I've let it slip in that first paragraph that I am still at Hopkins. My white blood cells are on the rise--slowly. The doctors seem happy with the blood counts with the lone exception that I haven't produced a stinkin' neutrophil. Since neutrophils are the lynchpin of the immune system they will not release me until they see that those are being produced and are on the rise. The doctors have not expressed any concern on that front, just that it will take some time. My only concern, then, is for my sanity as I pass days here in the hospital and miss the wife and kids.

For those who haven't had the chance to visit, I still look and sound just like me. I haven't lost any weight from when I was admitted and I'm generally in good spirits. The big change is the hair loss. I had my head shaved down to stubble when it started coming out. Now that stubble is quickly evaporating as well. I can live with that, especially since I still have my eyebrows and eyelashes. If the hair on my head was going to fall out I would hope that the facial hair would follow suit so I can claim a silver lining on that front as well--the smoothest shave ever!

As always, thanks for reading.

--Russ.

Don't bring long fingernails to a nail clipper fight

Good morning all:

Time for a little observation/humor . . .

Many, many decisions are made here in the cancer wards that are meant to stave off the dangers of our existence. Here in the wards dedicated to the treatment of blood cancers that means that infection risks and bleeding risks are identified with the same wonton-ness that witches were identified in Salem.

A prime example is the decision made by the hospital to restrict those veritable fountains of germs, kids, from the hospital wards at all times. It used to be that it was just during the highly contagious flu season. However, every season is flu season now that H1N1 came on the scene, and now my visits with the kids are left to the waiting area outside the elevators. That is where I do my visiting when they come. But that is one that makes sense.

Others, I simply never thought of. When I wrote in an earlier post that if people feel they need to do or bring something they should think food, I was in the habit of taking prepared/cooked food and reheating it in the microwave. I did this thinking I was doing a good thing. The nurses advise me to avoid foodborne illness, and prepared food that sits out is just gathering microbes, etc. Well, as it turns out I was doing the wrong thing. I innocently discussed this practice with a nurse at one point and she told me of a rule that I didn't know I was violating! No reheating food in the microwave--and that applies to the hospital food (I never bothered reheating that, I just shovel it in and get it over with). The reason behind this is that unless you are heating the food to the point of cooking it a second time (yuck), all you are managing to do is to get the food back to the temperature where bacteria thrives. The thinking follows that you are actually better off to let the food cool as it will and eat it that way. Who knew?! Funny thing, I went to go pop some microwave popcorn last night and the microwave had been taken out of the common pantry. Maybe I ruined the microwaving party that had been raging for who knows how long in unit 5C.

Finally, some decisions are quite perplexing. Given the short notice that I received before being admitted one thing I overlooked was the length of my fingernails. They were getting a little long as of March 12 and now, by April 3 they are longer than I can ever remember them being. I don't know how you women type with these things. Anyway, I asked my nurse if there were any nail clippers on the ward so I could trim them down to a more appropriate length.

Admittedly, my reasons were mostly out of convenience. I spend a lot of time on the computer between continuing work responsibilities, blogging, and entertainment and these fingernails of mine just get in the way. But my request for nail clippers was rejected and safety was given as the reason. "We don't want you to accidently cut yourself and bleed", they said. Funny, they don't have any problem poking holes in me to extract bone marrow or spinal fluid and for a brief period of time I had 5 lumens on 2 separate lines in 2 separate incisions leading directly into the jugular vein in my neck--and they're worried about me bleeding out in some horrible nail clipper accident.

Seeing that I was up against the juggernaut of all hospital arguments, I argued that I'd been clipping my nails for quite some time and thought I was pretty handy with them, but that I never had nails this long. I continued that if I had an itch in the middle of the night I may well claw myself to ribbons. I could bleed out in a self inflicted scratch before anyone knew what ws happening! In that way I hoped to convince the nurse that the nail clippers were the lesser evil in this case. No dice.

So, when I do get home I will, of course, hug and kiss Marla and the kids and give the dog a scratch (carefully) behind the hears. But when all has settled down my thoughts will turn to the nail clippers. Perhaps then I will cheat death and trim them to a safe and proper length.

As always, thanks for reading.

--Russ.

Update two days later, the hits keep coming

Good Evening all:

When last I wrote I was able to share the good news I received on Monday--the absence of cancer from the most recent biopsy.

Tuesday was also a banner day. While it might not sound like much, heck, it was even the subject of a post that featured uncertainty and trepidation the first time around, I got a Hickman catheter installed in my chest. Its a fairly short, uneventful surgical procedure but what it did was replace the central line that had originally been placed in my neck so that the chemo could start on time. So, not only did one line get installed the other got removed. All-in-all I like the trade. First, I lived with the line in my chest for some time and so it isn't as weird as it felt before. Second, the central line was, well, a pain in the neck. It was placed in such an inconvenient spot for keeping the line dry while showering (assuming I wanted to wash my hair). It made sleeping uncomfortable and really hurt when the tubing got caught on something and my leash grew unexpectedly shorter.

In addition to the change in chemo/blood product delivery systems, I have started to hear rumblings about going home. During rounds on Tuesday the doctor mentioned that they might consider sending someone home, even though their counts hadn't recovered, around day 18 or 20. For me that would be Friday or Sunday this coming weekend. Today, the same doctor seemed to focus on Monday as a possibility. Regardless of the day, the fact that it is even part of the conversation is very liberating--the proverbial light at the end of the tunnel. This, of course, is the big news.

In an April Fool's worthy turn of events my hair started coming out today. There is a place here at Hopkins that will assist cancer patients in managing their appearance. Today they helped me manage to rid myself of a lot of hair with a very short shelf life. So, I'm back to my close-cropped look and can only guess how long before close-cropped gives way to bald.

I guess it can't all be good news but I feel very positive about how I'm doing. I haven't lost much weight, I've got plenty of strength and energy and an appetite that doesn't belong in a cancer ward. The chemo has worked and it hasn't taken much, if anything, away from me. Now to enjoy a little bit of time at home, with life a little more like normal, until I need to gear myself up for the running start toward the bone marrow transplant.

As always, thanks for reading.

--Russ.

Update

Good afternoon all:

Wanted to write and quickly disseminate some good news that I received yesterday. On day 14 of my protocol, they take a bone marrow sample (yes, that's three holes in my pelvic bone in the span of 17 days) to review the effectiveness of the treatment that I received.

While the results are not official, under the microscope it appeared that there were no cancerous cells found and, get ready for this, perhaps the beginnings of healthy white blood cells being formed! Let me tell you what this means, and what it doesn't mean:

What it means:

1. The chemo did what it was supposed to do, take me out of immediate danger by halting the production of cancerous cells.
2. That there is a chance that my body will be producing healthy white blood cells in the near future.
3. Perhaps there is something to this whole visualization bit, and that perhaps I/we, do have the capacity to heal ourselves or alter the body's processes with a modicum of concentration and effort--I guess I can't rule it out anyway.

What it doesn't mean:

1. I am cured. This treatment is to buy time for the Bone Marrow Transplant. History with this disease indicates that a second remission is not likely to be a lasting one. But as the attending physician told me when he laid out the plans for all this: "if the chemo doesn't work then we're in trouble." Glad I'm beyond that hurdle.
2. I'm going home soon. Even if they were white blood cells being formed, I will need to achieve the necessary levels in order to go home. I need to start somewhere of course, but the pace that I recover the white blood cells is anyone's guess.
3. I am free and clear of all the negative effects of chemo. The Research Nurse that is leading my protocol lingered after rounds today and I asked her about my full head of hair. She said that she was surprised that it hadn't fallen out since she last saw me and indicated that no one, to date, had kept it and that I should expect it to fall out in the coming week. Perhaps a nice reminder that I've achieved one milestone in a process that will require many such achievements and that there is still quite a bit to be endured as well. But I guess one could hope, right?

So, good news: I can say that the immediate threat has been removed and I am now a little more firmly on the path toward a long term cure. Breathe a sigh of relief for me. My red blood cells are dropping and so I'm not carrying that much oxygen these days . . .

As always, thanks for reading.

--Russ.