A small peek at the test results

Good Morning All:

As I've promised I'd like to update you on at least some of the midpoint tests that I've been able to take thus far. I was not able to have the bone marrow biopsy yesterday as scheduled because a medicine that I was taking was supposed to have been stopped over the weekend and someone forgot to tell me. As a result the bone marrow biopsy will be taken on Friday (and my admittance for round 5 is tentatively scheduled for Monday, January 5th).

I did get a full-body CT Scan yesterday. The test is very, very short and the results are almost instantaneous. My treatment team had a chance to review the scans of the lymph nodes in my body after I left and my Nurse Practitioner called me later in the day to give me an idea of what they saw.

Audra said the scans looked great. She went on to say that all areas where lymph nodes were swollen due to lymphoma showed great improvement. They had even improved over the unplanned scans taken in October when they were checking for an infection! I guess there is little more to see from the CT Scans than that and the news seems to be very positive, yet again. She did not provide me any measurements but I will get those from her when I'm next at Hopkins and will pass along any more details I get.

--Russ.

Back to business

Yesterday I returned to Hopkins as an outpatient following my mini-hiatus for the holidays. This was to be a basic check of my blood counts though there was thought that I would need platelets while I was there.

As it turns out I did not need platelets yet. My white blood cells are back on line and the reds are holding steady in the low-but-unremarkable range. I was sent home after about 1 or 1.5 hours!

My next trip to Hopkins is Monday. If all goes well I will have my follow up bone marrow biopsy and, I believe, a follow up CT Scan to check the current progress of my treatment regimen. This sets up my first "Envelope" Day for some undetermined date following the analysis of these tests. I must say I'm already anxious about it. Will the news be good as I suspect it will be? Will the bone marrow be responding more slowly than the lymph nodes have been? What if the news isn't good at all?

Many questions will be answered by these tests and, in my experience, plenty of others will be generated in their place. I've come to realize that there are many unknowns with cancer. There isn't a path that cancer patients all travel. First, we start with a common diagnosis and based on our specific type of cancer a treatment plan is devised using the current literature and thinking of the medical community. From there, everything, the treatment plan, the patient, the family, the medical team all need to be prepared for a bit of a roller coaster ride as treatments and processes and timings change with the patient's response to treatment.

I suppose the roller coaster analogy can be extended to include my earlier "Unremarkable" post. My goal, and perhaps the goal of most treatment plans, is to have a pretty boring roller coaster ride. We all get that first hill to climb as we learn of our diagnosis but after that the drop may be steep or short, the twists may jar you a bit, or be fairly smooth, or even non-existent. Other hills on the ride? Perhaps, perhaps not. Corkscrews, loops and any other roller coaster mechanism for turning a cancer patient upside down is to be avoided but can be dealt with. The only problem with this analogy is that roller coaster riders are looking for thrills. Cancer patients are thrilled with the absence of thrills. The roller coaster rider in me is bored by the ride I'm on while the cancer patient in me has both hands in the air and is hollering at the top of his lungs. One thing they can agree on, however, is that neither want to ride this ride again.

--Russ.

So, Russ, Whatever came of that cold?

Good Morning all:

For those who celebrate a holiday at this time of year, Happy Holiday (assuming you celebrate only one of them)! If you don't celebrate anything at all well, I hope you enjoyed time off of work or at least enjoyed the time in the office when the rest of your co-workers were away.

Just a quick update on the cold, where I spent Christmas, etc. Since my Tuesday post my cold improved. To me this seems improbable since my White Blood Cell counts have not yet returned as of Wednesday. Tuesday was, by far, my worst day. My post from the hospital that day (seems there was some confusion, I was treated as an outpatient that day) was one of the brief moments where I was awake during the 24 hours that the calendar named December 23rd. I actually typed the post while lying on my side, using the hunt-and-peck method! I dozed off several times at Hopkins, upon returning home I went straight to bed and pretty much stayed there until the following morning and it seemed like my fever broke several times during the evening.

The 24th was better. My cold had actually moved down on the 'Chief Complaint' list behind a couple of mouth sores, one on my tongue in particular, that was causing me some discomfort while eating. Again, had an appointment at Hopkins on the 24th. I am treated as a plague carrier up there now and am not ALLOWED to linger in the waiting room with other patients. I am to announce my presence to the nurses when I arrive for outpatient appointments so that they can quickly remove me from the ranks of the undefiled! The good news is that all the cultures taken from this cold have been negative. No positive cultures have grown for influenza or RSV or Ebola, Scarlet Fever, Whooping Cough, Anthrax or any other cultures I can imagine they might be testing for up there in Baltimore. So with nothing to indicate that it was anything more sinister we are left to assume it was a simple cold unworthy of a name or the energy to achieve a positive identification.

I felt pretty good on the 24th though the nose continued to run. This marked the third day of a three day facial tissue bender. I was using at least a box a day. It didn't matter the variety. I'd use ones with aloe, anti-viral, even generic varieties couldn't escape my insatiable need for tissues.

Marla and I had agreed some time ago that going to a Children's Christmas Eve service was probably not in the cards for me this year. Instead I got to really cook up a good meal for the family. I cooked a special Christmas Eve dinner for the family while they attended our traditional service. Marla and I enjoyed a nice grilled Delmonico steak from the dutch market while the kids got one of their favorites--popcorn shrimp packaged and frozen by SeaPak (we don't normally cook two main dishes so this was truly a special occasion for them since neither are convinced yet that they like steak). I also made Ratatouille and a new recipe for me, Hot German Potato Salad--a sweet and sour warm potato dish. This last was supposed to be made in a crockpot but I sort of adapated it for baking and went with it. It all came together as Marla and the kids got home and I found that I could eat it with little discomfort from the sores in my mouth. We frittered away the evening and went to bed with sugar plums dancing in our heads.

I awoke Christmas morning and my head felt the sugar plums might have had a bit too much time of it. But, as I got up and around (no rest for the weary on Christmas morning) I found that my head started to clear and my nose wasn't running! I pretty much went all day without a sneeze and had a great time around Marla and the kids, my parents and brother, and some of my extended family from Pennsylvania. Without the aid of even remotely normal White Blood Cell counts I beat a cold in time for Christmas! Not exactly the stuff of legend or even the basis for a cheery holiday special but, man, it felt good to feel like normal. I can only imagine how down-and-out I would have felt if my little cold had actually been the flu.

Again, I hope everyone had a good holiday and for those whose time off continues, enjoy that too!

--Russ.

Overdue update

Good Morning:

Well, I was at Hopkins yesterday and I'm back again today. On Sunday I started showing symptoms of having a cold, primarily a miserable runny nose. I came to Hopkins yesterday and since my temperature was up they did cultures to determine if I had any of the particularly nasty viral infections (influenza, RSV). So far it looks like a mundane little cold that is having a field day in my body without white blood cells to impede it.

I woke up this AM with a fever and so I played good patient and let the nurses know. So, here I am, more cultures being run to rule out who-knows-what and a platelet transfusion in the offing.

--Russ.

Looooong Day

For those who regularly read the blogs this update will be more of the same from my post earlier in the week about them not having this down to a science yet. If you haven't read that one yet please scroll back a bit to get a sense of the sorts of frustrations that patients learn to live with, or game, along their way through treatment. The level of care at Hopkins is top-notch and I am routinely impressed by everyone from the Techs to the Attending Physicians. However, the interplay between departments can be woeful--another description of a harrowing visit to the outpatient clinic follows:

Yesterday, I knew it was coming. What I didn't expect is that my fate was sealed before I got to the outpatient clinic at Hopkins. When I arrived I was well aware that the schedule was tight. We had determined during my last visit that I would need to be transfused with platelets prior to having the 2nd round 4 spinal tap. I was arriving for a 9:00 appointment and my spinal tap was scheduled for 10:15. The only way even that was going to happen was if, and only if, the platelets were there and waiting for me at 9:00.

I'm not 100% sure what happened, but I did overhear some grumbling, complaining, even some arguing that seemed to indicate that my nurse for the day did not follow the Nurse Practitioner's orders from Monday. The nurse saw my counts from Monday, thought they were rebounding, not falling, and failed to order the platelets. Based on the false premise that blood counts were rebounding her logic was sound--I was at 48,000 platelets on Monday and only needed to be at 50,000 by Friday (according to research that I think the nurse independently gathered to determine if the platelets were necessary as I hadn't heard that threshold before). Even by my slow standard of recovering platelets in the late stages of round 3 I should have gained 10,000 or so per day taking my total to around 90,000.

But again, that was based on a false premise. The nurse should have seen the proximity of my hospital stay and realized that my counts were not likely to be rising. Having worked in HR for a number of years, and, fancying myself an astute observer of people and their behavior I was led to conclude that there is a real tension between the nurse assigned to me yesterday (the first time she had been my nurse) and my nurse practitioner who has been with me from the beginning. So my guess is that no effort was made by the nurse to verify that the platelet transfusion would not be necessary and instead put her efforts into finding fault with the nurse practitioner and undid the plan.

In the end, I arrived to Hopkins and was told by the nurse that the platelets had been canceled and why. The blood was drawn, tested, and by about 10:00 we knew that my platelet count had dropped dramatically, a transfusion was needed, and my 10:15 appointment for the spinal tap was laughable.

And so, we saw the platelets finally around 11:00. They transfused me with them over 1.5 hours to about 12:30. The nurse drew more blood to test to see what I had rebounded to and learned that I was only up to 37,000 platelets (shy of the 50,000 I needed). Based on discussions they decided to move ahead with the spinal tap while I was being transfused with more platelets. Superhuman effort was then needed to coordinate getting platelets from the blood bank, getting neural radiology to squeeze me back in, and physically getting me to that department.

I got the platelets hooked up at 2:00 or so, and was whisked away to neural radiology around 2:15 or so with the thread being that they could hold the window open for so long. I got to radiology and sat (as I normally do) for certainly more than 30 minutes (they had the same patient in there that they had when they called my nurse). My platelet transfusion had since come to an end even though I was told it was important that they be running during the procedure. Despite that, the procedure went well and I'm pleased to report that I currently am without those debilitating headaches I had in prior rounds. I wheeled out of neuro radiology around 3:45.

My earlier blood test revealed that I was also short on red blood cells. I suspected this would be necessary as I've started to recognize the symptoms--for me: pale skin, shortness of breath. As soon as this was confirmed around 10:00 I started pushing for my nurse to have the red blood cells ready for the 2 hour period where I am required to lay flat on my back following a spinal tap. The nurse confirmed to me that they were ready. I took this to mean that she had them and we'd be set to go upon my return to the outpatient clinic. Instead I returned to be informed that now they would contact the blood bank to get the red blood cells conveyed. This took its standard 30 minutes and it was 4:30 by the time the red blood cells got there.

Transfusion of a pint of blood takes 1.5 hours. I got 2 pints. That left my mother and me with a 7:30 PM departure from the appointment that began at 9:00. In essence, we opend and closed the outpatient clinic. Add drive time to this and you are looking at roughly a 14 hour day for my mom who left her house at around 7:00 AM and would get back to her house around 9:00 PM when all was said and done.

But after all that I'm feeling well, glad to scratch off spinal tap number 8, and confident that my counts should rebound by Christmas to allow me to be around family, etc. without concern. That's the best news of all.

--Russ.

Fleeing the house

Since I earned my freedom from having to go to Hopkins today with the harrowing transfusion on Monday one might think that I'd sit around eating bon-bons or otherwise enjoying myself. In many cases you might be right, however, yesterday and today Princess Audrey has been pretty sick: cough, throwing up, etc. So the household is in high alert. The unsick are all wearing masks and again, I might suggest buying stock in the manufacturers of Lysol (is that J&J?). My mother-in-law has taken the form of the cavalry and will remain here with Audrey and once I'm done with my 'computering' will head for the hills. With my blood counts on the verge of collapse I probably can't go anywhere exciting so I'll likely hole up at my folks place for the majority of the day and evening and return home to say goodnight to the kids and to sleep in my own bed.

There is little new to report--just looking forward to learning on Friday that my blood cell counts have dropped (a little early, I'm predicting) that I successfully finished round 4's spinal taps (and number 8 of 12), and that I've been transfused with all that I need to keep me rolling along.

--Russ.

They know what they are doing, but its not a science

Good Morning All:

I must say that I'm amazed at how much of a BUZZ my picture with Santa is generating. Marla comes home from just about every place she goes with someone reporting to have seen the picture and how glad they were to see me smiling. Rest assured, I am smiling fairly frequently and hopefully the picture helps convey to all that physically I am still in good shape (albeit a bit more chubby than usual since I've been told to eat protein and calories).

I wanted to share a brief story about my out-patient visit yesterday that underscores just how complicated this whole cancer treatment business is and the sorts of things that can fall through the cracks. As I go along I'm learning to 'game' the system and yesterday was yet another lesson on what areas need to be 'gamed'.

I went to Hopkins yesterday with my father. I brought my library book and little else to occupy my mind. I just left the inpatient hospital stage and didn't feel like I would need a transfusion, wasn't in line for any spinal taps or other procedures, so there wasn't any reason to believe that the visit would take any longer than to complete the routine blood tests. WRONG!!! As it turned out I was borderline in needing a blood transfusion and as an inducement they offered to allow me to skip Wednesday's out-patient visit. So, I said 'OK' and they started the process for getting some new blood into my veins.

You might think that this is a fairly routine process. They know my blood type, the blood bank is in the hospital . . . just pull the blood from the correct bin on the shelf, put it on a cart, deliver it to my nurse and away we go! Well, no, it isn't that way. You see, the blood bank will not issue blood unless it has tested my blood type within the past three days. Your reaction to this might be similar to mine when I first learned of this (but . . . once you know someone's blood type . . .) but when I asked I was reminded that many patients where I am being treated have had bone marrow transplants. In such circumstances a patient's blood type may well change and the issuance of the incorrect blood type would be devastating--so now I know and understand the policy.

When I first was made aware of this policy it was conveyed to me that my blood had simply not been drawn in the past three days and for that reason my blood type needed to be confirmed: a two-hour process. So, yesterday I pulled the ace out of my sleeve only to learn it came from the wrong deck of cards. "But I just left the inpatient ward. My blood was drawn two days ago" I smugly reminded my nurse (there is often confusion as the handoff occurs between in- and out-patient wards, usually in the form of discrepancies in appointment times, etc.). Nurse Nicole gave it right back and further informed me that just because my blood was drawn and tested for the normal blood chemistry does not mean that they tested the blood type. She went on to say that it was not routine for the in-patient nurses to request such a test since it isn't always needed and the two-hour delay in the instances where it is needed is acceptable since they have a captive audience! Nurse Nicole and I devised a scheme on the spot that I will need to enact in rounds 5 through 8 whereby I request that my blood type be tested on my final day of my inpatient stay so that the information is updated in the system in advance of my out-patient processes.

So, the blood drawn yesterday at 10:00 showed at 11:00 I needed a transfusion. The typing of my blood took two hours (or more). Nurse Nicole hounded the blood bank throughout the lunch hours and Dad and I sat waiting for the blood until 2:30. I needed two pints but they only release one at a time. A transfusion of a pint takes roughly 1.5 hours so the resourceful Nurse Nicole called down to the blood bank after 1 hours of transfusion to request the next pint of blood. For once the timing worked and the second pint showed up only about 5 or 10 minutes after the first pint had been completely transfused. Around 4:00 the second pint was hooked up. I got my blood and Dad and I strolled out of the inpatient office around 5:30--a very long time to sit in a doctor's office. It was not completely unproductive, however. I was able to confirm the complete lack of programming on daytime television, had fun laughing each and every time I watched President Bush duck a pair of Hushpuppies and my dad completed 16 sudoku puzzles (mostly easy ones I might point out) in about 4 hours.

New topic, briefly. In today's sports section of the Washington Post is an article about the Olympic swimmer who participated in the Olympics despite his diagnosis of testicular cancer prior to the games. The article (or should I say the swimmer) does a good job of capturing some of the newest shifts in my thinking and mental state as I go through my current process. I have not yet written about the safety net that surrounds a cancer patient during the process of achieving remission--but I will. This swimmer is now where I hope to be in a few months. No cancer in the body and undergoing periodic treatment to discourage its return. But the vast majority of the article focuses on the not-knowing and the general lack of a safety net when the cancer patient moves beyond the induction phase of his/her treatment. If you would like to gain insight into some of my thoughts/concerns as I progress and move toward remission this article will quickly give you an understanding.

Thanks for hanging in there on one my longer recent posts!

--Russ.

Midway

Well, I've made it to another milestone. I'm home now from my 4th round of treatment, or, halfway. I'm glad to be on the downslope of this process and am eager to have the tests that will show my progress to date.

The hospital stays are getting to be tedious and the homecomings all the more sweet as this process goes along. I can only imagine how I'll feel coming home from number 8.

A brief correction to a previous post is in order. The spinal tap I had while in the hospital was not number 5, it was number 7. Number 8 of 12 is scheduled for sometime this coming week.

All told I feel pretty good. Like the prior 'B' treatment, I've retained a lot of fluids from my hospital stay. It is somewhat uncomfortable to deal with and interferes with sleep but being home more than makes up for any of that.

--Russ.

Update

Well this round has seen its share of delays. Not only did I wait a week for my platelets to elevate enough to allow for treatment but there have been delays during my inpatient stay here to where I'll need to be in the hospital a little longer than I might have hoped. Where there was an outside chance that I'd go home today if everything went smoothly it is now looking like either late Saturday or early Sunday that I'll get to return home.

Much that happens here is based on timing. When the administration of one drug ends a test gets run and another drug begins. When these transitions don't run smoothly hours of delay quickly turn into new days in the hospital.

All-in-all things continue to progress in my favorite unremarkable fashion. I had my 5th spinal tap yesterday and it went well as spinal taps go.

As an update to yesterday's post, I did learn from my evening nurse, Amy, that the people who brought around the blankets, hats, scarves come almost monthly to Hopkins! Knowing that there are people who spend months as an inpatient here I am certain they look forward to that!

--Russ.

Just how much does it mean?

Hospital stays are simply not a treat. On top of the constant reminder of your illness by simply being here there is the diminished sleep, missing family, friends, and the comforts of home. The food isn't great and there's always plenty to complain about with the hospital gowns!


Prior to my cancer diagnosis I wondered about the charitable things people do around this time of year and just how much they meant to someone who was in the hospital with clearly a lot on their mind. Yesterday, I had a chance to experience this form of charity not once, but twice and would like to share my impressions.


First, I was visited by Santa! While this sounds somewhat juvenile it was a nice diversion, he came into my room without a mask (which is a breach of flu-season precautions but would have ruined the moment). He apparently was a patient at Hopkins several years ago, who knew!? He gave me a stuffed reindeer and, when I mentioned I had two kids, he handed me a second astutely figuring where the first would end up. My parents happened to be visiting at the time and my mom snapped the picture at the top of the post.


Following Santa by minutes were several gurneys loaded down with hand knitted hats, scarves, and lap blankets. I was invited to take a look and pick something out. I chose a very nice looking blanket that I had a chance to use last night while watching a little TV.


So what all did this mean to me? Does it help? I have to say that both events brightened my day considerably and to write about them at least brings another smile to my face. I can't speak for the other 14 patients on the ward but I'd say that if you have supported similar charities or efforts in the past you should feel that their mission has been achieved.


This gets me to wondering, however: I'm 'fortunate' enough to be going through this around this charitable time of year. How many similar efforts happen in the middle of the summer? How many patients are in the hospital on their birthdays with little to no fanfare? I plan to ask the nurses these questions for my own information, but I think I know the answer.

Here at Hopkins

Good Morning All:

Well, I finally got round 4 underway. Delays continue a bit as there was some confusion regarding the chemo drug order so I should get those underway this AM.

This should be a fairly short stay in the hospital and I'm looking forward to being home this weekend. This is a tough time of year to be away from Marla and the kids but the timing should work out for me to be able to get out and about on Christmas day.

I've beeen made aware that I haven't waxed philosophical recently. I have to say that my focus has been on getting this round moving and so the 'thought' that happens before those sorts of posts hasn't really been happening. Now that I've got lots of time to myself here in the hospital perhaps that will change later today or tomorrow.

--Russ.

The end of the delay - hopefully

Good Morning All:

Sorry for the gap in posts. There really hasn't been much news and we had a fairly busy weekend. So, not much to say and not a lot of time to say it . . .

I had my counts checked on Saturday and the platelets were still low. I had another appointment yesterday and they were high enough to be admitted. There was a slim chance that I would have simply stayed at Hopkins yesterday but beds were tight. I was told that there was a better chance that I could be admitted today. So I am patiently waiting by the phone for the call to Baltimore.

I wanted to remark briefly on the past week or so as this small disappointment continued. It is amazing to me just how important 'attitude' has become. While I don't believe that I let the disappointment get me off of my game, I can definitely say that it had me teetering a bit on the edge of negativity. There were times where a perfect storm of concern, disappointment, and anxiousness was threatening my normal cheery outlook. There were times where I could really sense how close a descent into despair might be, and it was a bit frightening. I appreciate the kind words of those who reassured me that the slow platelet recovery was normal.

I'm continuing to soldier on and it is much easier to do just that knowing that I've got the green light for round 4 finally. I met with Dr. Connolly yesterday and she indicated that I would go through the mid-treatment tests (CT Scans, bone marrow biopsy) a couple of weeks (right before Christmas?) following my admission. I'll certainly share my progress when I know more definitively.

--Russ.

Further Delays

. . . well the disappointment continues.

Again, my platelets continue to rebound at a very methodical pace and so my admittance for round 4 is in a holding pattern. My next appointment is Saturday with the possibility of being admitted on Sunday.

I'm lead to believe that there is nothing particularly alarming about the slow pace of recovery of the platelets and that there is little I can do (nutrition? voodoo?) to speed their production. If anyone has a suggestion to the contrary please let me know. Otherwise, I'm still at home really struggling to be patient.

--Russ.

Delays

Good Morning All:

Well, the news wasn't as I might have hoped yesterday. While my platelet counts are recovering they are not yet at a level that will permit me to begin round 4. I was a little disappointed and surprised that I'll need to wait several days before getting another check of the blood counts. This means that the earliest I'll be admitted would be Friday.

This isn't a major deal except that it is a rare disappointment in what has been an unremarkable series of treatments. So, in the meantime, I'm home. I'll be engaging in my regular 'schedule' of daily activities and will be sprinkling in some well-timed holiday preparations while I have energy, time and white blood cells.

--Russ.

Update

After several lengthy posts and a major holiday I figured I'd just take it easy and get everyone up to speed this AM. I had an appointment at Hopkins yesterday to check blood counts and to determine if I could start round 4 on Monday.

As it turns out my WBCs are again up to Super-Human levels thanks to some nifty pharmaceuticals but my platelets actually dropped a little. My doctor indicated that this tradeoff is fairly common and should right itself over the weekend. This means that they need to check counts again on Monday with the goal of a Tuesday start.

I am anxious to get the in-patient portion of the round over with so that I can move into the part where I begin to get feedback information on the progress of my treatment. I'll be getting some further CT Scans and a bone marrow biopsy all in an effort to gauge just how badly I'm beating cancer. Stay tuned to the blog sites because my efforts to get ESPN to cover the test results have proven unsuccessful.

Since it is new information to me I'll pass this along and sign off: The earlier CT Scan (from my fever-based trip to the hospital) that showed improvement in the lymph nodes in my chest apparently showed was the topic of discussion during my visit yesterday. My Nurse Practitioner shared with me the scan results and interpretations that indicated that nodes that had been measuring over 5 cm were at 8 mm. The most encouraging part is that these changes were seen after just two rounds of treatment! Here's to the hope that the bone marrow cancer cells are just as much in retreat as the lymph nodes!

Giving Thanks

It is a little trite, perhaps, to put out a list of things I'm thankful for today. I've been thinking about this all week and feel bolstered in the opinion that it is worthwhile item to share after reading the comments of my co-workers left on the Caringbridge site yesterday.

In year's past, if you asked me what I was thankful for on Thanksgiving I can pretty much assure you that the list would be short: family, friends, the chance to relax midweek, and the opportunity to eat comfort food in one large meal to the point of discomfort. But as I wrote yesterday, priorities have shifted and so here's a different list trying to be both inclusive and specific of the things that I am thankful for today:

1. My family: Marla, Nolan, and Audrey for being both pillars of strength for me and an inspiration to endure all that I must.
2. My parents and parents-in-law: For stepping back into those care-giver roles for me and my family that perhaps you thought you had absolved yourselves of some time ago. The amount of time and energy you have spent is not lost on me.
3. Friends who have stepped in to fill the day-to-day voids: Particularly the Baileys, Conways, Reeves who have done little, and not-so-little, things to help Marla and I achieve our goal of 'normalcy' for our daily family life.
4. The gifts we have received: We've received a bounty of meals, thinking-of-you gifts, baskets, cards, bags, and boxes. These range from very practical to whimsical. Each that arrives have been valued for what they do to sustain us in the intended way. Thank you to all that have sent gifts and cards.
5. The support network: If you are reading this post consider yourself thanked. It may have been the singular most helpful and important decision I made in the early days of my treatment to start these regular postings. While I receive numerous thanks for maintaining these blogs, I will continue to point out that these are therapeutic for me. I enjoy the opportunity to share my thoughts with those who care to know them and have come to cherish the journal entries and comments.
6. The above-and-beyond support from Westat: For the past five years I went to work with very talented, caring, and fun people. I had no expectation for the amount of support I would receive from an employer under such circumstances. I have been routinely 'blown away' by the magnitude of Westat's outpouring of concern both Corporately and from the individuals that I have been fortunate enough to work with. Several groups bear mentioning for admitting to, or orchestrating what seems to be, efforts of outreach--SPS, HRS, OMRG--Thank you.
7. The serendipity of my diagnosis: I had occasion as recently as yesterday to revisit why I went to the doctor on September 22nd. I still cannot pinpoint what drove me to the decision to seek medical treatment for a seemingly benign set of symptoms.
8. The medical care I have received throughout: Starting with the doctors at the clinic who first hit me with the "lymphoma" diagnosis, my primary care physician who orchestrated the following week to get me to a diagnosis, the specialists who pointpointed Acute Lymphoblastic Lymphoma and devised my treatment routine--thank you for my quick start toward a cure. I would like to thank, specifically, my dedicated care team at Hopkins: Dr. Roisin Connolly, Dr. Richard Ambinder and Nurse Practitioner Audra (sorry, Audra, I don't think I ever learned your last name) who direct my care and who have allowed me to have a role in the decisions made. You are all very impressive and skilled clinicians who have astounded me routinely with your willingness and ability to answer my questions with patience, tact, and a straight-forwardness that I had thought missing from the world of medicine. Finally, the legion of Hopkins nurses who have tended to me as either an out- or in-patient. I'm beginning to know many of the names and have come to value highly the knowledge you bring to my daily care. Thank you for your efforts on my behalf.
9. The medical advice from friends: My support network includes several individuals who have medical backgrounds or extensive family histories with cancer and other illnesses. At times issues in my treatment (my first blood transfusion, the spinal taps come to mind) have been discussed in these blogs. Your input on what I have written sets me at ease and calms me for those parts of the process that have been unsettling. Thank you for your willingness to consider what I write and for your thoughtful advice, input, and encouragement.
10. For my strength, energy, and attitude: It may be redundant a bit to touch on these as much of the first 9 items create or sustain them. However, it is a daily occurrence for me to wake up feeling that I am still the same person I was before my diagnosis. When I look in the mirror I do not see a weakened cancer patient ravaged by severe medicines that carry their own damaging side-effects. Instead (after I cover my bald head), I see a seemingly healthy vision of myself--same weight, good spirits and with the ability to get up and do things.
11. Positive 'vibes' in a tough situation: This actually has its genesis outside of my cancer and is intended to stop short of a political discussion. The U.S. is facing major challenges. I have had extra time to pay attention and hold no illusions that any administration can or will have all the answers. I am thankful, instead, for the degree of optimism and hope that the incoming administration seems to be maintaining. I see parallels between the struggles being faced by the U.S. and my personal health situation. In both areas hope and optimism can carry us beyond the tough early going.

I believe I have set down much of what has occurred to me in my Thanksgiving-thinking this week. If you read this on Thanksgiving, I hope you have a great holiday and that what I've written has given you the inspiration to look beyond what's set on the table or on the television for what you are thankful for. If you read this after the holiday, know that I thank you all for the opportunity that you have provided for me to reflect upon and appreciate something truly significant on Thanksgiving.

How Do I Answer Poll Results

A little over a week ago I put up a poll on the Blogger site asking folks to vote on alternative ways for me to answer the casual "How ya' doin'? that so often serves as a greeting and becomes significantly more difficult to answer when faced with a cancer diagnosis.

During that post I admitted to using what had become my standard response for quite some time: "Oh, I'm hanging in there." The impetus for the posting and the poll was to explore if there was some way to better reflect my current status (inflicted with a serious illness but handling it well and in good spirits) without burdening the peapod delivery guy or afternoon telephone solicitor with a dissertation on lumbar punctures and the timelines for resulting headaches (maybe that would work with the solicitors, come to think of it).

To be honest, I kind of rushed through the choices I included in the poll and perhaps they were a little uninspired. For those who did not see the poll, the options for me to use for answering the "How are you" question were: "I'm Unremarkable", "You wouldn't believe me if I told you", "Good . . . considering", and just sticking with "I'm hanging in there.

I received 21 votes. My three new options each received 4 votes. That leaves 9 votes and a clear mandate from my support network (assuming you believe that 21 votes from what has become a small army of a support network constitutes a mandate) that I should keep my old response.

I have to say I was a bit surprised at first. But, I've got time to think and digest and I suppose Marie's sentiment posted on the blogger site sums it up--the old response just sounds like me. Much has changed for me over the past couple of months. Priorities have shifted and habits and daily activities have come and gone. What hasn't really changed is what most people seem to associate with me: my attitude, my "voice", my outlook.

I've written several times that I have been given no reason to change my attitude or my outlook. With this in mind, it seems that perhaps the wisdom of the masses overrules the patient. Maybe, it isn't the words that I choose in order to respond to a casual question that never really sought an in-depth answer that is important. Perhaps, instead, the critical evaluation is the amount of thought going into the "How are you?" If the question comes as I'm being handed 8 bags of groceries at the front door I can see how this would be quite different from receving a call from family or friends who are calling to check on me--the detail of the response should reflect the thoughtfulness with which the question is being asked. My only concern is my ability to read the intent of the question. Please consider this an open invitation to press me further if I stop with "I'm hanging in there."

Thank you, support network, for your insight. I've said all along that these blogs help me as much as they serve you.

A Check-in with Remission Control

In the first few days after my diagnosis I relayed my news to a college friend who I knew to have several personal experiences with cancer in his family. One bit of advice that he had came from his mother's long battle--Some time has passed so I'll paraphrase a bit: "Doctor's are human too, do your own research and don't be afraid to make suggestions based on what you learn".

For those who have followed the blog from early on, or who have read back enough to have caught my "Remission Control" post on October 22 may recall my struggle with what little I control in the recovery process. At that time I concluded there was little within my control than to make myself available for treatment and another category of behaviors that I had labeled 'attitude' into which I was able to find a bit more to do that is helpful.

My friend's advice, which springs from watching his mother's long struggle with cancer, has served as a foundation for my actions as patient that I have put into the category of 'attitude'. It is actually better described as staying informed and it has recently borne fruit in several comforting and helpful ways that I thought I might share. My angle in using this advice has been to do what I can to help my busy care team keep on top of my complex treatment protocol and to better understand what they need to know from me so that I am prepared to give a full status report when asked.

Early on I had spent a fair amount of time learning about the Hyper CVAD treatment protocol and I have included a link to a very, very helpful article on both versions of my blog for anyone who would like to learn more about what I'm going through at any time. This research has enabled me to ask pertinent questions like: "I see this list of medications does not include the Steroids that were a very important part of round A1. Shouldn't I be getting them here in A2?" Whether I am right or not isn't as important as my becoming a consultative part of the treatment team.

Last night as those same steroids interfered with sleep a bit I drummed up an analogy where I'm part of a team of Tree Surgeons in charge of the health of a forest full of trees. While the real experts are trained to treat all manner of tree-issues across a wide variety of trees I might be likened to a Jr. Tree Surgeon assigned to know a single tree (me) with a single issue. While I might not have the breadth of training or the clinical insight of the oncology doctors and nurses, I do have a whole lot of experience with this single tree's health and well being. That experience coupled with a burgeoning knowledge of my single issue certainly has value that should be brought to bear on my overall treatment.

It probably doesn't surprise many of you who have worked or studied with me to know that I've become very data-driven in this process. I have been keeping track of my blood counts as I move through treatment phases. I can't recall if this was suggested to me from somewhere or if I just started doing it on my own. In any event it came in handy this week as I attempted to figure out what my plan might be for Thanksgiving. Could I see the extended family coming down from Pennsylvania or will I still be bottomed-out on white blood cells and at severe risk of infection?

Yesterday's test on day 13 of treatment revealed that my counts were still dipping a bit and seemed to point to my having to remain home from Thanksgiving festivities. However, my treatment team seemed to think that the counts should return by the day after Thanksgiving and changed the plan for my outpatient treatments to skip today and tomorrow's visit in favor of a visit on Friday where my counts should be up and planning for round four (or B2) can begin. Yesterday, I discussed my handling of Thanksgiving with my treatment team and mentioned that I would like to factor in any trends I might have noticed on blood counts thus far. I was met with enthusiasm and encouragement.

I went back to the numbers that I've faithfully been keeping and was able to identify a trend. Using the hospital admission date as day #1 of a new treatment round I was able to determine that the white blood cells hit bottom by day #12 and in the first two rounds returned to normal ranges by day #15. I'm happy to announce that day #15 is tomorrow and that I feel that there is good reason to believe that I should be in the normal range of WBC's in time for Thanksgiving!

So, while I'm not curing my own cancer or revising my treatment plan I do feel that my efforts to become an informed and good patient are helping if only to assist my treatment team and to bolster the positive feelings that have buoyed me through the process thus far.

Update

Good Morning All:

Heading out to Hopkins this AM. They are really moving quickly on the A-cycle part of my regimen. Since I tolerate it well I get the sense that they are interested in monitoring me closely and moving into the B-cycle when possible. This, of course, will shorten my overall treatment which I am astounded about and makes some of the goals I set for myself (e.g., coaching my son's little leage team this spring) more probable.

I was at Hopkins yesterday, my first Sunday outpatient visit, to receive a scheduled chemo treatment--the last of round 3, sort of a straggler on day 11. I am also scheduled for daily outpatient visits Monday through Wednesday this week. Unfortunately this means that I and some of those who have taken on the duty of driving me to Hopkins will be bearing a load--much thanks to those who shoulder this for me.

I learned yesterday that I am once again devoid (or virtually so) of white blood cells. They indicated that they wanted to monitor me daily as a result. The team was different on a Sunday and this marks a slight change from the every-other-day protocol that I had been on. We'll see if anything changes when we get there today. I suspect that the inclusion of Thanksgiving in this week is at least part of the rationale. I can get behind this because if my blood counts don't recover by Thursday I might have to miss out on seeing many extended family members that I have not seen since I was diagnosed.

Many thanks to those who expressed condolences over Bungo last week. It was an ill-timed shock but I think we've recovered as we head into this new week.

--Russ.

Update

Good Morning all:

A little late in getting to my post. We're in a little bit of dissarray as Marla has come down with some sort of cold/illness which means I'm required to run screaming in the opposite direction leaving behind a cloud of Lysol in my wake when she comes into view. This, of course, makes getting the kids ready for school a particular challenge.

To top it off I'm getting the LP (lumbar puncture, the kinder-gentler name for spinal tap) headaches again--this is day 2 and I'm not sure how much longer I'll be upright. The caffeine is brewed--we'll see how it all plays out.

--Russ.

Saying goodbye to a critical care team member

My support team lost a critical member overnight. He wasn't a cheerleader, wasn't terribly energetic and couldn't do much in the way of helping me through treatments and the like but he was there probably more than most anyone and he'll be missed terribly. Our dog, Bungo, died last night after being (of all things) gored by a deer in our backyard.

We were cleaning up after dinner when two very, sharp and pained yelps came from the backyard. Marla went outside to look as a large, young-looking and antlered buck paraded across our backyard. Bungo had taken refuge under our porch. Marla called to Bungo and he came out limping and not moving very well. The light from her flashlight revealed a gouge on his shoulder and we thought that maybe he had received that cut and perhaps a kick to explain the limp, in a confrontation with the animal.

We put Bungo into his doggie bed and I drove him to the Animal Hospital where I learned that the gouge on his shoulder was not the most serious of his wounds. He had also been gored in the abdomen. The vets said Bungo was in shock and worked to stablize him so that they could perform exploratory surgery to see the true extent of the damage. Around 11:00 we learned that Bungo's vital organs had not been hit, it seemed he would recover, and we went to bed perhaps a little worried about the recovery process for a dog his age with this sort of trauma. We got another call around 3:00 informing us that Bungo never came out of the shock and anesthesia from the surgery and that he had passed away. Bungo was 13 and was starting took look and act his age. When I learned of the wound to his abdomen I wondered if or how his little beagle-body could take such punishment. I suppose it couldn't.

Bungo was a master of lying around the house, in tune most with the comings and goings of sunbeams through windows and where to find crumbs of food on the floor. But he brought so much to my recovery by simply being my daily companion as I recuperated at home. Most of the time his reward was a pat on the head or a scratch under the chin and I have to assume that was enough for him. No matter where I went in the house he was there too. Following my trips to Hopkins he was always there at the front door (albeit laying in his doggy bed, not prancing around like he was 3 again) waiting for me to return. He was simply determined to be there for me--and he was, in a way and to a degree that is not possible for people with lives and families to achieve. It sounds somewhat melodramatic to write and read but there it is.

Clearly, our family is sad as a result. Bungo was my wedding present to Marla and he's been there for everything. This includes our recent battle with cancer. While I have stressed that my family continue to do the things that normal wives, sons, daughters do in order to maintain some sembalance of normalcy, Bungo did just the same. His job was to keep me company and he did just that while overcoming stiff legs and failing eyesight to navigate our split-level house--all in a simple effort to be where I was. How can anyone replace such a loyal and devoted companion?

Milestone Update!

Good afternoon All!

Just wanted to share a bit of cheer with everyone who is checking in on me. As you all know, one of the most daunting parts of my treatment plan has proven to be the 12 spinal taps that I was slated to endure. My plan calls for 2 taps each of the 8 rounds of treatment with the exception of rounds 7 and 8. So far the fluid claimed during these taps indicate that cancer has NOT invaded my Central Nervous System and so the chemo treatments I receive at these times are preventative in nature.

This morning I received spinal tap number 6 (#7 if you count the earlier failed one). It was a peice of cake and I am now smiling at the downslope of the "spinal-taps-to-go" tally. I'm not yet half way through with anything else but as this was a source of pain and frustration in the early going it is nice to know that I've made it halfway through--PARTY!

--Russ.

How am I doing? How do I answer?

When I was first diagnosed with cancer (and before many folks knew anything about it) I encountered a very difficult dilemma. Co-workers, family, friends would ask "How are you?" as a casual greeting. How could I answer? The person asking typically had no clue of my diagnosis so I could not see assailing them with all the negativity of the situation. But was putting on a happy face misleading or unfair?


My initial, and current strategy, is to use my standard answer: "I'm hanging in there". That had been my eeyore-esque attempt at humor prior to my diagnosis and it seemed appropo to offer it up immediately after my diagnosis and before many knew--almost my own inside joke. This all seems to be a very unfortunate bit of analysis to heap on a reflex answer to a question asked out of no real regard for my well being, but the question being asked of me carries much more weight and bears more scrutiny than it ever has before.

At this point, however, my old reflex answer doesn't serve me well. Whether I'm being asked as an informal greeting or someone who knows of my situation is interested in how I'm doing I think I need to do better than "I'm hanging in there." I need a response that can reflect the positive outcomes thus far but still carry the weight of the circumstance. It might be nice, too, if it would fly well over the head of the unsuspecting grocery clerk or waitress who just happens to ask "How you doin'?"

I've got some ideas. Maybe I'll post a poll on the blogger site (another reason to visit that site if you haven't already). In any event please continue to ask how I'm doing. If you are in the know you might get a dissertation on blood counts and treatment regimen that only Russ can provide. It might be, instead, that I try out one of my new 'pat' responses to see how it fits.

In any event, keep asking. I am not uncomfortable sharing how things are going and am gratified every day with the numbers of people who check in and express concern. I have said often that it is one of the highlights of my day to check the blog sites and to post to them.

Update

Good Morning All:

Not much to report today but I am happy to announce that I'll be going home tomorrow. After getting a couple of doses of chemo today I'll travel home and finish the last bit of the therapy for this round as an outpatient. Very welcome news.

--Russ.

When questions come to mind . . .

Good morning!

Slept pretty well last night. I'm on a different floor this time around and the 'rules' are a little different. On the 5th floor it was pretty much routine to be woken up every other hour or so to take blood pressure, temperature, and heart rate. On THIS floor they take vital signs at 11:00 pm (called the midnight check, mind you) and 6:00 am leaving a luxiourious 7 hours to sleep as I am able! I started dosing off at 9:30 last night so I'm feeling pretty refreshed this morning.

I did have spinal tap number five yesterday. Again, this one was under an x-ray machine (flouroscopy) to aid the precise placement of the needle. If they can all go the way yesterday's went then the remaining 7 spinal taps will be a peice-o-cake. They took a fresh sample of my spinal fluid to be certain that the cancer is still not in my central nervous system (another, continuing good sign). They also injected a chemo therapy drug, Methotrexate I believe, into my spine as a preventative measure.

I got a surprise visit from the physician at Hopkins who is taking the lead on my case. I thought she was still on vacation--she's from Ireland and was visiting family. Instead, yesterday was her first day back and she stopped by when she learned I was in. Dr. Connolly is a refreshing change to my prior experiences with doctors. She will sit and talk, she answers all questions in a direct fashion and without relying on jargon to do so. She doesn't back away from questions that ask for her opinion or to 'make a prognosis'.

Yesterday, I told her about the CT Scan showing shrinking lymph nodes from my fever-based admission while she was in Ireland. She had heard of the results but hadn't actually seen the scans yet. That's when a question occurred to me: "Of course this is encouraging, but the scary part is what is happening in my bone marrow. Is there something to infer or a prediction to be made on what is happening in the marrow based on these early results?" I asked.

Dr. Connolly replied that while it would certainly take another bone marrow biopsy (joy!) to be certain of anything, the shrinking lymph nodes would, in most cases, point toward either status quo or even probably some early success in the bone marrow. She added that it would be extremely unlikely that the treatments would have an effect on the lymph nodes and that somehow cancer in the bone marrow would flourish.

I continue to be encouraged and it looks like I'll be returning home Monday or Tuesday next week to await the RBC count plunge!

Update

Good Morning All:

I got a bed yesterday and round three has begun. This round typically lasts longer than the last one but I tolerated it very, very well the first time around so I'm hoping for the same.

I'm slated for another spinal tap today so I'm loading up on caffeine with the hopes that between the stimulant and forcing myself to lie flat for a couple of hours following the procedure I might escape the headaches that I'm still dealing with from the last 'lumbar puncture'.

So, for those keeping score I believe I am now two days ahead of schedule!

--Russ.

Cancer Treatment's a lifestyle change, don'cha think?

Those who have worked with me and taken a call from me before 9:00 am have certainly heard me say it: "I do my best thinking in the shower."

Under normal circumstances I would stumble into the shower each morning to get ready for work and the warm water would get the wheels turning. I'd think about whatever was on my mind the day before. After a night "to sleep on it" it was amazing the ideas (some of them a bit out in left field) that would come to me in the shower. My showers didn't take 2 hours or anything like that, but there were times where I realized that I had gotten so completely caught up in my thinking that I simply let the water run over me for several minutes. I'd stand there with no real accompanying effort to actually get clean, all while I fleshed out the details of a tweak to a compensation system or thought through how I might present a new idea to a team.

Now I have to be careful when I shower. I didn't mourn it publicly, but Marla has already heard me lament that my showers are simply not the same anymore. The catheter that springs from my chest and the dressing that covers it cannot get soaked. I took the advice of a nurse when I first got the Hickman and use plastic wrap to keep it covered with little fuss-or-muss. But this quick solution won't allow me to stand in the stream of warm water and simply let the water wash over me. Instead I have to make judicious and precise use of the hand-held nozzle in order to carefully soap up and rinse off. My new showering ritual has no room for the mind-wandering, problem-solving excursions of several months ago and has shortened to really just a few minutes. In fact, it probably takes me longer to get the temperature right and apply the plastic wrap than it does to actually get clean.

This morning it occurred to me that this is yet another temporary casualty of my cancer treatments. And it isn't the luxuriousness of lingering in a nice warm shower that I'm writing about--though I certainly miss that. It's the chance to quietly solve all the world's problems (or at least the one that bugs me most) and to emerge with some new idea to act upon or an angle to try when I report to work. That nice burst of inspiration brought excitement and energy to start the day--something that would color and shape my early morning activities.

It appears that I may be in line to be admitted today. Here's to the start of round 3 of my treatment and the speeding of my schedule by a day or two. And here's to identifying yet another reason to endure the treatments and be excited for my progress--now if I only had hair to wash . . .

Update

Looks like I'm in a holding pattern. I'm on the list to be admitted but I learned yesterday that there is a bit of a backlog for beds at Hopkins right now. As of last night they were still working on what were supposed to be Monday admissions. So, even though my body and the doctors were willing to move ahead into round three a few days early there isn't a bed to make this possible.

My understanding is that I will get update calls each morning and evening until a bed opens up. My bags are pretty well packed and when I get the call I'll certainly post the news!

--Russ.

The storm before the calm

Its Monday and its a couple of days before I get admitted to Hopkins again to begin round 3 of chemotherapy. There is so much to do and seemingly so little time to in which to do it.

Before I go too far down the path of sharing the nitty-gritty of what I feel I need to do and open myself up to the howls of "You shouldn't be worrying about those things!" and "Ask for help!" I think I might shift gears just a bit and explain why there is a storm before the mind-numbing hospital stays and why it isn't as easy as just letting someone else do it.

This all hearkens back to many of the same sentiments I've expressed before. My goal in all of this is to get better. If I had to pick the path that I take to reaching that goal it would be the one that causes the fewest 'problems'--problems for me, problems for family, friends, coworkers. And I define problems pretty liberally. Marla having to figure out how to be a single parent for a short time AND have to pay the bills is a problem since I can (and will) pay the bills before I go. Similarly, there are things that I simply cannot do at work since I'm not there every day but there are burdens that don't HAVE to be shifted to those who are already picking up my slack.

I have the energy and the ability to alleviate or mitigate these 'problems' today and tomorrow. Doing so allows me to feel useful and to enter the hospital with only my treatment and recovery on my mind. If I can believe what I hear about my treatment regimen, there will be a time where these activities shift from a workable set of activities to a matter of over-extending myself. At such a point I may well agree that 'I shouldn't be worrying about these things' and will turn around and ask for help. My only concern is that I won't be able or willing to recognize when that time comes. I'm pretty certain, however, that it isn't now . . .

Update from Hopkins

Just an outpatient follow up today. The counts continue to climb and it looks like I'll be able to start my next round of chemo a day or two early. I pretty much had a headache from about Wednesday evening until this morning. They are currently pumping me full of caffeine (did you know that there is actually an IV drip of caffeine all you coffee drinkers?!) and it seems to be doing the trick. For a time we were unsure of the cause, but it seems to be residual effects from Monday's spinal tap. So now I know that I need to load up on caffeine before and after future spinal taps to avoid this . . .

Thanks to all who continue to check in.

--Russ.

Worth the price of admission

I apologize if this post is devoid of humor or good cheer. I am blogging through a terrific headache. There is quite a bit of good news to share and so I want to fight through it to get all this out there.

First, I just learned that I'm going home today--very good news. They were unable to grow a culture from any samples that they took. This leads them to conclude that I had no infection of any sort and that my fever must have had more innocent roots.

But the big news I actually received after I typed yesterday's post. One of the medical tests they performed on my first evening in the hospital was a CT Scan of my sinuses and chest. I asked the doctor when he informed me of the need for thistest if I could get any updates regarding the mass in my chest from this CT Scan. He said that he would be able to see those lymph nodes but said that given how early I am in my treatment regimen that any noticeable difference would not be likely.

Yesterday at rounds I was told that, indeed, there is a noticeable decreasing of the mass in the lymph nodes in my chest well before doctors would routinely see such an effect with this treatment. This, of course, does not account at all for another mass not viewable in the scan or the cancerous cells in my bone marrow but it is a first indication of the efficacy of the treatments I'm receiving. Excellent and encouraging news.

Neutrapenic fever

Surprise everyone!

As I sat at my computer yesterday morning I was shivering away. There is a draft at that spot in my house so I didn't think much of it. But when I went upstairs to make lunch and was still shivering I thought I might need to take my temperature. It was up but not beyond the critical temperature of 100.4 degrees. I took a nap after a quick lunch and again took my temperature and it was around 101.

I called the number I've been given and was told to come in. Soon thereafter I learned that I would be admitted and, once here, I've learned that I will be here until the WBCs increase. I learned this morning that they are on the rise but that I'm not out of the danger zone. They took a lot of blood and other samples overnight and so far have not learned of any source of infection. They haven't even duplicated the temperature I took at home.

I've been told that infections are practically impossible to avoid while I have no ability to fight them off. That doesn't mean that I wasn't hoping to dodge this process. But, while I am here I am getting more information about my progress through the B1 phase of my treatment.

Update

First off: Get out and vote. I already cast my ballot as an absentee since it seemed like a pretty good possibility that I'd be either hospitalized or restricted from being around crowds. So I'm done!

Second, an update: Yesterday was a very long day at Hopkins. My appointment was for 9:00 and I was there until 6:30! The first order of business is to draw blood and test the blood counts. Very little can happen until they know that I won't bleed to death. They found that my white blood cells are pretty much nil and that I needed more blood transfusions--platelets AND red blood cells this time. I received two pints of platelets and was able to get the levels in my blood up to the absolute minimum needed to do the spinal tap. The spinal went well (at least judged against other spinal taps). It required only one stick and the pain felt was fleeting. My back is a little sore today but otherwise I'm glad to be 1/3 of the way through my scheduled spinal taps.

I'm scheduled for a quicker visit Wednesday. They are going to give me another pint of red blood cells (they wanted to give me a second pint yesterday but it was getting comically late) and of course test my blood counts. As soon as they get into the normal range again they'll start talking about when I can be readmitted for round 3, AKA A2 of my treatment plan.

Thank you all for easing my worries regarding the need for transfusions. I asked my head nurse about the further need for transfusions and she said that in her experience most patients need more of that sort of thing on the B-components of my treatment plan and that she'll let me know when I have something to worry about. Good to hear.

Finally, very early on I got asked about the possibility of donating blood and I directed the question to my primary physician. Her response was that with blood testing the way it is today they don't feel that such burdens (travel, time spent for donors and I'm also guessing administrative for the hospital) pay off. She said that Hopkins' blood supply is routinely strong and that if blood donation is a way that you'd like to support me you can do so by bolstering your local blood supply. So I guess the answer is no, you really don't need to donate blood directly to me but donating blood is a good idea and would support a regional system on which I am currently relying. If you decide to donate please let me know--I'd like the chance to say thanks.

Update/Funny story

Good Morning All:

I'm just giving a quick 'hello' and a reminder that I'm headed to Hopkins to try and get Friday's failed spinal tap out of the way. I'll be there most of the day.

Wanted to relay a funny exchange between my kids Audrey (age 4) and Nolan (age 7) yesterday. After a fairly quiet day at home we let the kids watch a movie last night. As always we let them negotiate with each other to try and arrive at the final selection. Audrey was interested in Aladdin while Nolan was thinking Peter Pan and they weren't really negotiating and instead were simply re-stating what they wanted to hear.

At one point Nolan wisely suggested, "Why don't we do Rock, Paper, Scissors, Shoot?" At this suggestion Audrey promptly replied, "Silly Nolan, we don't have that movie." As you can imagine Marla and I laughed heartily at this.

For those wondering what movie we ended up watching: Nolan won the Rock, Paper, Scissors best-two-out-of-three. I put Peter Pan in the DVD player and then the two of them decided that they would rather see the Rescue Heroes movie. Consensus reached we relaxed the last bit of a quiet Sunday away in our basement watching the Rescue Heroes save the world from certain doom.

Pheeling good about the Phillies

On the blogger version of my blog (if you are reading Caring Bridge, please feel free to click the link to the blogger site--its pretty cool) I was asked by a co-worker to comment on the Philadelphia Phillies World Series win. Marie knows that I'm a baseball fan and that with my extra time probably took in a fair amount of the contest between the Phillies and the Tampa Bay Rays. I did watch the series and I do think there are lessons to be learned. Since my blog is devoted to my treatment I figured I'd slip in some of those lessons.

First of all, congrats to the Phillies. They were clearly the better team though the Rays did provide a fair amount of excitement throughout the playoffs. The Phillies won the series and perhaps their most dangerous hitter was in a slump to enter the contest. From young, exciting players like Ryan Howard, Chase Utley, Cole Hamels, and Jimmy Rollins to the improbable, respectable pitching performance from 47-year old Jamie Moyer the team simply didn't get challenged throughout the playoffs. I suspect they'll be just as good for several years so get used to them.

Now for the lessons: Prior to the season, the Phillies shortstop, Jimmy Rollins, predicted that his team would "win at least 100 games". Of course at the time he meant that they would win at least 100 of the normal 162 game season. In the end they fell short of that mark and won 92 games. As his team entered the playoffs Rollins was reminded of his prediction by the press. He smiled and replied, "I never said it would be regular season games." He and his team won 11 more playoff games to become world champs and finished with 103 wins for the season.

Conversely, the Tampa Bay Rays followed a very common pattern. The Rays came into the playoffs the 'team of destiny'. They went from last place in the prior season to first place this season--leading the free-spending Red Sox and Yankees practically from beginning to end. As the playoffs began they looked like they would breeze to a world series win. Everything was coming together--pitching, hitting, base running, defense. Then, in a fateful turn of events in the American League pennant series against the Red Sox the Rays collapsed. In the span of 2 and 1/3 innings they blew a 7-run lead and a chance to win that series 4 games to 1. While the Rays eventually did win that series in 7 games their 'team of destiny' status was irretrievably damaged and they simply were not the same team against the Phillies.

So what is there to learn? The Phillies' approach was to remain calm and positive and to do all the things within their control to achieve their desired outcome. The Rays, it can be argued, failed to maintain control of their outcome. At some point the 'team of destiny' ceased to do all the things that they had done to win their division and to breeze through the first 1.5 series of the playoffs. Even for professional atheletes the state-of-mind needed to achieve one's goal is not a light switch to be turned on at whim. Instead it is a habit, something that must be maintained throughout and this can trump physical abilities in many circumstances.

While all seems to be going well for me in the early stages of my treatment I think it is important that I don't simply assume that things will turn out well because I'm me (the cancer patient of destiny?). Instead, I need to do all the things within my control to get better and to keep the same positive focus that Jimmy Rollins had if/when things aren't as I predicted.

Update

I was asked by a Caring Bridge site reader for an update on round 2 and how my response has been. I'll say that its been pretty smooth--I've got some sores in my mouth and throat but they don't interfere in eating really. Yesterday I thought I was starting to get that nauseous sorta feeling in the morning but fought my way through breakfast and took some medicine for that purpose (ew, my modifier is dangling there but I'll leave it in for comedy's sake--I took the medicine for nauseousness, not eating breakfast). As it turns out when I went to Hopkins I learned that my blood counts had dropped. The White Blood Cells are very low--right on schedule--so now I'm at high risk for infection and pretty much stuck at home. Also, my Red Blood Cells were very low. For those that don't have medical training or a reason to otherwise know this, Red Blood Cells carry oxygen from the lungs to your body.

As I look back on the morning I realize now that I was getting very winded running up and down the stairs in our split-level home helping Marla to get the kids ready for school/halloween parties. At any rate, the fix for that is to receive a blood transfusion. I suspect now that my feeling poorly in the morning relates more to the Red Blood Cell counts and not nauseousness. To me the need for a transfusion sounds scary and severe but was assured that this is a common part of cancer treatment and, in my regimen, particularly common for the 'B' treatments (see the link to the Hyper CVAD treatment plan to understand more). So, until someone tells me that needing a transfusion is a cause for concern I will trust my treatment team and remain unconcerned by it.

The spinal tap did not go so well. In fact it was unsuccessful after two attempts. According to the nurses, the spaces between my vertebrae are pretty small and after 3 prior taps (two requiring two attempts) the possible spaces are pretty well riddled with scar tissue. This means that the methodology will be changing on the spinal taps and they will be done under flouroscopy which I understand to mean they will use x-ray technology to determine the correct path/placement of the needles. I'm all for anything that will improve the experience as they are getting progressively worse and I've still got 9 more to get!

I'm home and feeling fine. Eating candy like mad--I've been directed to get plenty of calories and protein (there's protein in the nuts in Snickers, right?--stop laughing). Still have the same amount of energy and feel good. Here's to hoping that I dodge a fever during my neutropenic period, the WBC counts come up in short order, I get a bed at Hopkins and I move this process ahead by a week or so--how cool would that be?!

Terrifying? Well, I suppose so . . .

"It must be absolutely terrifying sometimes" my mom said yesterday as we were leaving my outpatient appointment at Hopkins.

I responded with the truth. It is terrifying--sometimes. There are short bursts of terror when I allow myself to dwell on what I'm up against and what falling short of recovery means. I suppose there are other sorts of terror that lurk within the process of being treated for cancer that many wouldn't use "terror" to describe: admitting publicly that you are very seriously ill when you have been healthy all your life, checking into a hospital and becoming a cancer patient for the first time, trying to figure out how to learn to accept charitable offers with both grace and dignity when you've never asked for, or needed it, in the past.

Even as I read back over the previous paragraph those last three don't seem to measure up to being made very, very aware of your mortality and yet I will say that I have spent much more time dealing with them than I have the severity of my illness. I myself wonder at times if I am simply avoiding the topic of mortality. How can it be that there are times where I am able to practically forget about Acute Lymphoblastic Lymphoma?

I have thought about this lack of doom-dwelling long before my mom and I had our conversation yesterday. I believe that the explanation lies in the fact that I have thrown myself into the effort of being cured of cancer. Each day is a new little battle where I have to do things differently--I'm not going to work, I'm eating different foods, I'm taking lots of medicine, and I'm making sacrifices like not going to the kids' halloween parades tomorrow (in favor of a spinal tap, I might add). These are all battles aimed at winning the war. Many of the comments I have received regarding my posts mention my positive outlook. Aside from my optimistic tendencies, my outlook is positive out of the necessity to sustain my daily efforts and because I have yet to receive any reason why it should be otherwise.

I cannot think of any way that I could endure the daily battles or the larger war if I spent my days focused on the potential negative outcomes. I'm not sure I understand how anyone could.

--Russ.

P.S. Thank you all for continuing to read my blog (over 800 visits so far on Caring Bridge alone), voicing your support, and cheering me on. It makes a big difference and it is why I make visiting my blogs part of my morning routine as I head off to battle.

Update

Good Morning!

Well, it took all day yesterday to come to the determination that I was able to come home. My body needed to get rid of the primary chemo drug that I was given on this round. By the time the test was taken, analyzed, and a decision made it was almost 4:00. But the doctors decided to release me and so I got home around 7:45 last night!

Did I ever sleep. I pretty much went to bed at 8:30 and slept for 10 hours--something I never do. It amazes me just how hard it is to sleep in a hospital.

Just an upate on my prior post about my case being boring. Yesterday they skipped me altogether on rounds--I'll take it.

Finally, I'll be curious to see what side effects I get on this round of treatment. The chemo drugs and steroids they are using on this regimen are different. The mouth sores are a bit more common on this one from what I understand. Fortunately I'm not seeing any of those yet.

I already have gotten 'puffy' from the steroid they've given me--I put on 10 pounds of water weight in one day. The doctors didn't believe me until they reviewed the charts! Let's hope that is about as exciting as the side effects get since my primary doctor indicates that my reactions to these first times through the two regimen will pretty much dictate what I can expect for the remaining treatments.

Staying under the radar

One of the daily occurrences in a teaching hospital is the ritual review of each patient's case. The Attending Physician leads a team of Residents, Med Students and Nurses around to review each patient's case on the ward. Typically this means that you have a conversation with the Attending Physician each day but often it is in the presence of about 10 people!

Yesterday, my visit by the Attending Physician and her entourage wasn't quite the same. Instead of the normal crew of faces, many of whom I don't see except on rounds, it was the Attending Physician, the Resident that was on floor at that time, the Charge Nurse, and my Nurse. That's it. Four. Now, it was Saturday so the people that might expected to join rounds could be smaller as a result but when I greeted the Resident with "hail, hail the gang's all here" she replied, "there aren't many of us". When I saw how small the group was I asked, "Not a very interesting case?" The attending's reply confirmed for me what I've been coming to recognize in this process: "You don't want to be an interesting case."

And she's right. If being interesting means having complications, delays, or worse lack of success in removing the cancer then I'm glad to be particularly boring. So far so good on that front. There are no complications and my side-effects from chemo have been so minimal as to be considered non-existent. The progress or effectiveness of my treatment has yet to be measured--that will not occur for a couple more rounds.

For now, I'll take hearing that my case is not interesting and that I continue to appear strong and healthy for a cancer patient. Perhaps I'll be the most unremarkable cure yet.

Greetings from Hopkins

So, I'm here. Saline, Chemo, and some anti-nausea medicine are flowing--round 2 is underway. As usual, sleep is a little hard to come by in the hospital so I'm awake early and a bit tired. Otherwise, I know what to expect this time around and all is proceeding according to plan. When this is done I'll be one quarter of my way through the process with at least some hints that if my recovery from chemo goes as it did in round 1 it could actually speed up some!

I must say that I am routinely impressed by my care team here at Hopkins. My Doctors are quite good and clearly have reputations and abilities that rank them among the tops in the country. But more frequently I interact with the team of nurses that have been assigned to me. They are knowledgeable, attentive, and always armed with the "I don't know but I'll find out for you" answer and the energy to follow up with me.

On a side note, I must have received a cancer-patient promotion or something. My room is bigger than last time and I've got a water view! I'll try to take a picture when the sun comes up with my phone and post on the blogger site.

Update

. . . and as soon as I post that I get a call from Hopkins saying they're ready for me. Zoom!

--Russ.

Definitely Maybe

I got a call from Hopkins last night saying that I am definitely going in today. However, it seems like each time I am scheduled for the in-patient stuff I'll need to 'wait' for a bed to open up. This means that the Doctors complete their rounds by about 10:00 and begin the discharge process for those who are getting kicked out. Once they figure out how many beds are opening up then they begin the triage process for inviting folks in. So, for those keeping score, I'll be home for most of today and will likely head up to Baltimore sometime in the afternoon/early evening.

Next post from Hopkins!

--Russ.

Brief Update

Perhaps a little less time for the type of introspection I've done the past couple of mornings. I am still proceding under the assumption that I'll return to the hospital tomorrow. As such, I need to pull items together to take with me (where's that laptop?), and set a few things in order around the house to make temporary single parenthood manageable for Marla.

I'll be back on line from the Hospital and will be certain to update "Where's Russ" when I know definitively where I'll be tomorrow.

--Russ.

Remission Control

My last day of work was October 1st. On that day I scrambled to compile all of my open items and to have some sembalance of an organized hand-off to my employer. As I was winding down and getting set to leave for 24 weeks of chemo treatments a co-worker hit me with a flurry of phone calls. "This will be hard for you. You are a control person." she said during one of them. Initially I took this from her to mean I was controlling or somehow unable to delegate. As we talked I realized, however, that she had made an observation of me that I was only starting to make of myself.

Days before, as I went through CT Scans, PET Scans, Blood Tests, Marrow Checks and one physician handed me off to the next one in line I became very aware of how little control I had in this process. I had no expertise or knowledge to bring to bear on the situation, no actions that I could undertake to speed or improve the process, and it was pretty clear that this was not the time to think 'out-of-the-box'. As I sat in one doctor's office I wracked my brain for just what it was that I COULD control. I came up with two: I can control my attitude and I can make my body available for treatment.

When I checked into Hopkins and had my first conversation regarding my treatment with team of doctors I presented these two sparse spheres of control and practically pleaded with them to contrive more for me. I prompted with 'Nutrition, perhaps' and was greeted with a solemn shake of the head. Instead they concurred that the two I had come up with seemed like a pretty full and complete list.

Now that I'm several weeks into this and have had more opportunity for introspection I suppose that I have not yet come up with other areas where I control the outcome of my treatment. I do think that there is more to controlling my attitude than what I had originally meant.

At the time of my initial brainstorming 'controlling my attitude' meant more about keeping a positive outlook and being helpful as a patient or maybe even more succinctly: don't get grumpy. Many responses to what I have written thus far have remarked on my outlook, attitude, upbeat nature and, in truth, it simply is not in my nature to be grumpy.

Controlling my attitude has taken on much more meaning in the intervening days. It now includes making smart use of my energies (now, while I have plenty and obviously later when I won't), and keeping myself from becoming a hermit by blogging, e-mailing, and checking in at work. It also means looking for ways to be part of the solution by being an educated patient, a savvy consumer of health insurance, and an active participant in the broader effort to find better treatments and cures for my illness through charities like the Leukemia and Lymphoma Society.

As I've started shovelling concepts and related activities under the broader heading of 'controlling my attitude' I have found that the unsettling feeling of being out of control has abated and in its place is a sense of confidence that I will get better and that I will successfully weather all that this illness, the medicinces, and the doctors can throw at me.

The hard job belongs to the family

Those who spoke to me early on following my diagnosis probably recall that one of the over-riding concerns I had included little to do with me but instead focused on what effects all these lifestyle changes would have on my family.

Initially I struggled with how to tell my children (ages 4 and 7) that daddy was as sick as he is, without being unfairly vague or even dismissive of their need to know and understand what was happening. I worried extensively about Nolan's ability to make soccer practices and games and to do all the things that 7-year olds with healthy fathers are supposed to do. I worried about the fear that my eventual hair-loss and other physical signs of my illness would cause my children. I even planned responses for the conflicting and possibly scary messages my kids might receive from well-meaning adults.

I stressed over the disruption in the routines. How could my exhaustive treatment regimen possibly be incorporated into our daily lives with acceptable outcomes (arriving to school on time, completing homework, eating meals)? Would Nolan's academics suffer? Would Audrey regress a bit, behaviorally?

The 'what-ifs' and the 'oh dears' in being treated for cancer seem to stem from those items that we spend our regular daily lives trying to control and that are just a quick nudge away from chaos. I maintain that Marla has the difficult job of the two of us since, as a patient, my path has been well laid-out for me and the consequences for not staying on that treatment path would be unmistakable and unerring.

But having written all of this, it is evident to me now that my family is handling it pretty well. Marla is getting to work, the kids to school. Clothes are washed, dinners--healthy ones--are cooked, and homework is completed. Families are resilient and routines are what we make of them. We've simplified and changed some things around. We've all made sacrifices in the early going. In the end I suppose there is another lesson learned: stop worrying about 'how its gonna be' and instead set the priorities as a family, make your choices, lean on each other for support, and make it happen.

I would like to thank everyone who continues to support Marla with words, meals, actions, offers of actions, thoughts and/or prayers. I am fortunate to have her as a wife (and nurse). She is shouldering quite a bit and doing an admirable job. I am a lucky, lucky man.

Blogspot as new Visit Russ venue?

All:

If you are seeing this message it might be because you followed a link from my Caring Bridge site. This is my blogger version of my blog. The goal remains the same, to inform everyone what is going on, to provide me an outlet, and, in the case of blogger to allow for more 'projects' and interactions along the way. As promised on Caring Bridge, if you are looking here you should be able to find the clamored for Russ-with-a-mohawk pictures. Please feel free to wander around this version and let me know what you think and if you have ideas for enhancements.

--Russ.

Good News!

I had a follow up visit at Hopkins yesterday. My bloodcounts rebounded quickly and I am well on my way to round 2 of chemotherapy. I even get a week off of follow up visits, can back off on about 7 medications I've been taking daily, and could show my face in public!
So far it seems that my body is handling the dosing well, not betraying me by giving in to the nasty side-effects (hair loss aside), and is staying strong. I am coming to realize that this, along with a smooth, unremarkable movement through the plan my doctors have for me is probably what I should be shooting for. 1/8 of the treatment is behind me and I'm encouraged for similar results in what remains to be experienced.
For those who are interested, I added a link in the links section to a web page that details the treatment plan that I am on. 8 rounds of chemo, 2 different cycles that alternate within those 8 rounds. Round 2 is likely to begin with a hospital stay beginning Friday, October 24th that would last that weekend and perhaps through Monday.