Time flys by

I knew it had been a while since I last posted. I didn't realize that it was now over a month ago, however.

Let me get you up to speed on some things:

1. My radiation treatments came and went, largely without incident. There were a few minor side effects and those are beginning to dissipate.
2. I have begun the maintenance phase of my chemotherapy. I'm taking a few more pills than I was originally led to believe, but again, taking a few pills (some daily, some weekly, some quarterly) is nothing compared to what I had been through.
3. I am completely immersed at work. It is almost as if I never left at this point. There are still times where decisions that were made or evolutions that occurred during my 7-month absence surprise me, but otherwise I've been able to pick up the projects that I was forced to drop in September of 2008 (at least those that still had relevance) and have started to conceive of new ones.
4. Nolan's baseball team has one remaining game. We are 6-2. Our boys are hitting the tar out of the ball and are certainly ready for the challenge of moving to kid-pitch next season. I'm very proud of their progress and the process of coaching them this season has been just as rewarding as the last.
5. I was able to catch up with my adult baseball team yesterday. Almost like the Blue Angels' missing-man formation, they were attempting to play a playoff game with 8 players on the field. A stark reminder that I fell slightly short of that goal coming out of chemotherapy. It was nice to see them and I let them know that all signs point to me playing ball with them in the fall. I even snuck in and caught a few pitches to warm up the pitcher between the 1st and 2nd innings!
6. I also had my first haircut since the infamous mohawk haircut yesterday. My hair has grown in nicely. I think it looks a little darker with possibly a little less gray. It was still short--#2 clippers didn't take any hair off the sides of my head--but it was somewhat uneven. The top was a little 'bushy' while the sides were still pretty close-cropped. We went with the #1 clippers and I got an all-over buzz cut. I've decided that I actually like the look and might keep it!
7. Audrey had preschool graduation on Friday. Each and every one of these celebrations means so much more to me now than they did before. She's getting to be such a big girl but I'm still pretty certain that Kindergarten is not ready for her.
8. Marla and I surprised the kids with a day trip to Hershey Park during the Memorial Day weekend--just the four of us. We had a great time trekking across the park. We needed the time together and away. We've laid the ground work for at least one trip to the beach this summer and perhaps another weekend trip to an unannounced location in the fall.
9. We are starting to talk about the logistics of getting a new dog. We miss Bungo greatly (particularly when we drop some food on the floor!) and I still find myself looking for him when I open the front door. We have some things to do before that can happen, however.

While the title of this post may indicate that life has been a blur, let me assure that it has not. Each day begins with a deep breath and a cathartic soaking shower with that great big shower head. I am savoring each event--even the small ones. Leaving work having made a difference again there leaves me feeling like I've started repaying the commitment and the patience that Westat displayed in waiting for me to return. Not an 'I'm sinking in debt' kind of feeling, but more of a 'Yeah, this is the first payment on a 30-year mortgage--but its MY house!' kind of feeling.

I owe a lot to a lot of people for all the support, well-wishes, gifts, cards, prayers, visits, meals, and favors. There isn't a chance that I could conceivably repay it all. Perhaps I will attempt to create a comprehensive list at some point and take a stab at sending out a thank you. I think the process itself would be an overwhelming one (but good for me) and the expression of gratitude would likely fall well-short of what those displays meant to me and my family along the way.

Clearly, I have other things on my mind and the Blog as a connection has taken on a reduced role in my life. It gave me purpose and an occupation when I needed one. It kept me in touch with those who cared about me and freed me from having to recount the steps of my treatment over-and-over. Writing served well as an outlet for the emotions involved with cancer. Reading the comments on a daily basis gave me that little kick-in-the-pants I needed each day to maintain a good attitude and a positive outlook. I think, however, that it is time for me to close this out. My job now is to move beyond cancer while keeping it away. That requires that I put aside the habit of dwelling on it.

I will leave the blog 'out there' for others to find and read and to catch those who were checking in somewhat infrequently. But unless and until I have a need, this will be my final post. Thank you all for your participation in this forum. I have maintained in each and every conversation I have had about the blog that it was absolutely the best decision I made surrounding my battle with cancer and that it made all the difference to me. The fact that you were reading and responding gave it a 'weightiness' that allowed it to fill many of the activities that I was forced to abandon for a time. I will always be grateful for that.

--Russ.

They didn't break me

Good afternoon all:


I'm writing today from Hopkins. My role as patient hasn't ended, just changed. I'm here to meet with Dr. Connolly about my transition into the maintenance therapy phase that should last the next two years. In addition, I will have my first radiation treatment before I go. This is the first time that I will have spent a significant portion of a day at Hopkins since my last outpatient visit to the hematology clinic and I'm having a sensation/realization that needs to be shared.

This morning I was hearing more about the soldier in Afghanistan that opened fire in a military hospital. I believe it was a parent that was proclaiming that the military had 'broken his son'. This was said in the same way that you often see in the movies where the drill seargent 'breaks down' the soldiers so they can be built up again into a fighting machine but clearly the connotation was not at all positive the way it is in the movies. Instead it was more to say that the soldier that shot 5 fellow soldiers was less the son that the man raised and more the product of a military training system that was somehow flawed or incomplete.

For seven months I dealt with a loss of control that concerned me enough to be the subject of one of my earliest blog posts. Dealing with this loss required acquiescence, flexibility, humor, determination. I needed a separate Russ from "Work Russ" and "Home Russ" so a new role was created: "Patient Russ". I spent many days leading up to my return to work wondering if I would be able to regain the "Work Russ" and, to some degree, the "Home Russ". Now I have returned to Hopkins after working for several weeks and assuming old roles and responsibilities. I have regained much of the control that had been missing for many months in a very quick and quiet fashion. Returning today has felt different to me. I don't feel out-of-control here as I had for quite some time. It feels good to know that my temporary role as chemotherapy patient didn't wipe clean my memory of and capability for being in control of my life at work and at home. Neither cancer nor Hopkins broke me during my chemotherapy. It feels good to realize that today as I sit and smugly type away . . .

Milestones

Good Evening all:

The kids are in bed and I figured I'd take a few minutes to let those who are still keeping up with me know what has happened over the past week and what lies just ahead . . .

I learned on Tuesday that my bone marrow biopsy and the PET scan came back absolutely clean. In the words of one doctor I am now considered to be "clinically cancer-free". Note that I have not been told that I am in remission. I believe this will only happen following the the two years of maintenance therapy where I will take a daily dose of oral chemotherapy. In any event it feels good to have confirmation that the therapy that has taken the majority of a year to complete has done the job it was intended to do.

Additionally, this week I met with the radiation oncologist to discuss the potential therapy as a follow-up to my chemotherapy. The radiation therapy would center on my mediastinum (read: chest) in an effort to try and prevent a relapse in that region. After my meeting with the doctor and talking it over with Marla we have decided to undergo the radiation therapy. The benefits are obvious but there are drawbacks in the form of possible cancers stemming from the treatment that could arise 10-15 years down the road.

Finally, I am poised on the brink of a physical improvement to the quality of life. Tomorrow morning I will go 'under the knife' to get my hickman catheter out. Once that happens the physical limitations that I have been operating under for 7 months will be over--I can lift heavy objects, not worry about repetitive motions, go swimming, and take a normal shower. Marla, of course, is thrilled to not have to play nurse any longer. All this time the catheter has required a daily flushing and weekly dressing changes--all of which Marla has done will patience and acquired skill. But just as my trips to Hopkins became a chore so did these tasks. Marla is ready to retire from nursing and I'm eager to no longer be her patient.

In fairly short order things are returning to normal and the quality of life is returning as well. It feels very good to have finally gotten to this point. Thank you to everyone for your support, thoughts, and prayers.

--Russ.

Where's Russ?

Good Afternoon All:

Sorry for the long delay in posts. I am thoroughly enjoying life without the every-other-day trips to Hopkins. I have returned to work pretty much full time and am coaching baseball with reckless abandon. Everyone is asking me if I'm tired. I can pretty much keep a busy schedule during the day. I do fade in the evenings and am compelled to go to bed a little earlier than I had been. But that is a mere incovenience, a small price to pay for leading an active and productive life again.

I happen to be writing this from Hopkins. Today I came up here for an early morning appointment to get a PET Scan done and also a bone marrow biopsy. These are the tests that I have been waiting for--the final 'did it work' sort of tests. In true Russ at Hopkins fashion I did get a little bit of a surprise. They did routine blood work and found that I need some red blood cells--so I'll be here a while. Guess this isn't a switch that gets thrown and all of the sudden I'm healthy and without effects from the chemotherapy.

In any event, several new milestones are on the horizon. The test results should be back this week. Assuming those go well the next major step is to get the catheter taken out of my chest. This is a HUGE deal as I'll go back to living life without the physical restrictions that I've had for over half a year: no getting wet, no swimming, no physical activity that involves intense use of the chest muscles or repetitive motion.

Finally, in a couple of weeks I'll meet with my physician here at Hopkins and presumably will transition from active treatment to maintenance therapy. That will mark the major change from frequent monitoring to quarterly appointments.

Thanks for reading and keeping up with me. I would assume that my busier life-style will cause my posts to be fewer and further between but I do hope to keep the blogs going for a while longer. I have yet to figure out when and how they should stop.

--Russ.

An Update

Good Afternoon All:

Well, I've gotten a run of good news following my brief hospitalization. First of all, I was only an inpatient about 24 hours and I came home around dinner time yesterday evening.

Today, I had a scheduled out-patient visit that was to serve as a follow up to the suspected infection that caused the fever that led to my hospitalization. I learned today that not only do my doctors and nurses feel that I probably don't have any infection, but my counts are up above critical levels to where my risk of infection is much lower. This should be the last time that I need to deal with the challenges of being neutropenic.

As a result I am able to make good on my plans to make my first appearance back at work tomorrow and to coach my son's baseball team during their first game this weekend!

Bumps ahead

Good Morning All:

Believe it or not I'm posting from Hopkins. During what should still be one of my final 3-times-per-week outpatient visits I developed a fever. They tried to keep me from being admitted but my fever grew worse and they decided it was best to admit me so they can monitor my fever and give me some strong antibiotics since I currently have no natural illness fighting capabilities. Just like my other hospital admission for a fever, I have not had a fever over the magic 100.4 since I was admitted--a good sign. I asked the doctors about the odds of me going home after just one day and was told that they normally like to see 48 hours of being fever free. No matter how I do the math I can't seem to get to 48 hours of being monitored at any point today.

When it became pretty clear that I was going to get admitted yesterday I thought of a sign I had seen in my neighborhood recently. I had started taking walks almost daily to try and get my stamina up for work and the activities of daily life. During one of these walks I noticed a sign that said "Bumps" alerting the driver that there were speed bumps ahead. I hadn't seen the sign before--was it an omen? Hard to know for sure though if it was I don't like the plurality of the omen.

In the end, this shouldn't really delay things aside from the physiological effects of having some sort of infection (white blood cells are being sent into the breach as soon as they are made, and platelets are fragile). I am still at the mercy of my white blood cell counts returning to an acceptable level and then I plan on returning to my normal activities.

--Russ.

The fear . . .

Good Morning All:

As this blog is an outlet for me, I feel it is time to share the darker, haunting side of dealing with a cancer diagnosis. This post has been brewing for quite some time but until now I have not been 'in the right place' to write the words and deal with the topic.

In my less-upbeat moments, when perhaps I quietly wonder about what caused the cancerous cells to start growing and what might cause them to start back up in the future, there is a typical unease that will begin to take hold. I've thought of many analogies for it and will share a few before I'm done writing, but suffice to say that this unease can and has been a consuming worry for me at times. It has already darkened my mood for several days once already and I don't believe that it will ever completely leave me alone.

I have received what I consider to be outstanding care at Johns Hopkins. I have placed a tremendous amount of trust in their abilities and continue to be confident that they will deliver the best possible results in my case. For over six months now, the staff at Hopkins have been carefully monitoring me and my body. Seemingly benign symptoms were scrutinized and worried over. C/T Scans were ordered for insignificant viruses that elevated my body temperature to a measly 100.4 degrees. Red blood cells and/or platelets were transfused when the levels dropped too low. My catheter was replaced at the first sign that it might be moving. The breadth and depth of their experience and knowledge has required me to submit to their judgment on many occasions.

In the very near future my interactions with Hopkins will drop from several times per week to several times per year. If tests to be run within the next couple of weeks show that both my bone marrow and lymph nodes appear to be cancer-free, then I will be sent home with lower dose oral chemotherapy, some steroids and an appointment to come back in three months. But the possibility that cancer could return won't dissipate like the nurses had performed an exorcision. I'll carry that concern home with me along with the prescriptions.

While I intend to learn as much as I can from the doctors and nurses on how to spot early symptoms that cancer may have returned, I cannot learn in a short time what they have learned as an institution over decades. Just like it was before I was diagnosed, I will be responsible for monitoring myself. Only this time I will have to do that with the full knowledge of what could be. I'll be like the child that is riding the bike without training wheels and has already fallen once. I like the freedom of riding the bike, but I'm still a little unsteady and my knees have been bloodied and bandaged.

Before my diagnosis there was still quite a bit of the bullet-proof teen left in me. That self-confidence that my body couldn't/wouldn't fail me has been replaced with the knowledge that it could again. The uncertainty of what would make that happen in the future can move the needle on the gauge from concern to fear, when I allow it.

Some time ago I was having pains in my chest that felt very, very similar to the ones that drove me to the doctor back in September and led to my lymphoma diagnosis. One night, after the kids had gone to bed, I told my wife that I was worried about the pains and that she should prepare to hear that I had relapsed. In a very necessary reversal of roles, Marla quietly 're-diagnosed' my symptoms (correctly, I might add) and more importantly bolstered me in a way that allowed me to recover the 'attitude' that has carried me for the past 6 months. I don't doubt that I will need her services in this role in the future--again, I'll say I'm lucky to have her around.

I feel I've changed quite a bit over the past six months. It will be interesting to see what will happen when the new Russ re-enters the world of the old Russ. I'm sure there will be times where my actions/reactions will seem foreign or unexpected by co-workers, friends, colleagues. Perhaps there will be times where the things that I do or say seem out of place, even to me, as I apply a new set of life experiences to a common problem or task at work.

Only recently have I been able to hold onto the 'attitude' when I look this transition to the Maintenance regimen in the eye. I am an optimist by nature and perhaps some of the good things that I've been able to re-assume are carrying me: coaching Nolan's team, returning to work (I've set a tentative plan for that), not worrying about the timing of the next hospitalization are all examples. But even the less-momentous, more mundane tasks (like doing the grocery shopping again) look oh-so-different to me these days and serves as a counter to the concern that would otherwise nibble away at me.

Yesterday I received a card from a family member on Marla's side who is also a cancer survivor. In her note, she took the opportunity to congratulate me on having finished my last hospitalization but she also wished for me to "retain the sense of how wonderful your life really is, which comes when you have a major health crisis and get past it." I think this sentiment captures what I am beginning to feel as I emerge from my chemotherapy regimen and I'm thankful for her well-timed blessing.

In the end there will always be a lingering fear of cancer's return. I've read enough 'survivorship tales' to recognize that this is the case. But with all that I'll be returning to, and the new vantage point on life that I've acquired, I'm pretty confident that my moments of dwelling on that fear will be limited. Thanks to all who have led me to this point.

--Russ.

At last . . .

The spinal taps and hospital stays are over. I'm relieved to be home without any similar burdens on the horizon. There is little more to say today that is more important than that.

--Russ.

The delay in the rearview mirror

Good Morning All:

Thanks for all the well wishes I've been receiving as I start my final round of chemo. The chemo was hung last night and it continues to flow. I'll be receiving my 12th and final spinal tap in about an hour--man, I'll be happy to cross that one off the list!

I wanted to get back to a more introspective post now that this 3-week delay is behind me . . .

As my mom drove me to Hopkins yesterday she surmised that the timing of this delay, right as I reached the end of the process, must have made it particularly tough to deal with. I will concur that it was difficult to stomach just as I was beginning to anticipate life following the chemo regimen.

I will add, however, that I was infinitely better prepared to deal with such a delay now than I would have been in round 2 or 3, for example. I have been through this process now for 8 cycles over 6 months and I have seen quite a bit and learned much about the process and what variables are at play at any given time. While this last delay was frustrating, I at least understood what was happening and could put it in perspective. At the very least I was able to keep my sights set on life following round 8.

On the other hand, had this delay occurred at the outset, while I was still formulating my goals of coaching Nolan's team, getting back to work, etc. frustration may have given way to despair. I can't be certain how I would have responded to early setbacks but I would have to assume that the confidence and upbeat outlook that carried me through this process would have been harder to find and maintain. Without the 'attitude' that I've come to rely on I am not certain that the treatments would have been as smooth or, scary to think, as successful as they have been.

As I sit in my hospital room and contemplate the 8th and final in-patient treatment I also can find reason to be thankful that the majority of the delay was caused by an illness that I might have been just as likely to get had cancer never been in the picture. Sure, part of the delay was the typical waiting for platelets and the recovery from pneumonia and flu might have been slowed by the lack of white blood cells. But those are temporary suppressions of the same blood-producing system. That should return to normal as the chemicals leave my body. In the end, I can look back at the last few weeks and still say that I am physically strong as I prepare to finish my chemotherapy regimen. That was probably the first goal I set for myself: that I can finish this process with one of the same mantras I had when I began it . . . "I am not frail."

I've gotten the call!

Good Morning All:

Finally. Something to post and its good news! Yesterday I went to Hopkins for the first time since last Monday when I tested postive for the flu virus for a second time. This time they wanted to admit me on the spot since I did not have any of the flu symptoms! I wasn't prepared to be admitted on the spot so we compromised and settled on today. I've already received the call that a bed is open and I will be high-tailing it to Baltimore this AM to claim my spot for the 8th and final round of chemotherapy.

I had to scramble a bit since my logic led me to believe that the earliest I would be admitted was Wednesday. As a result I had several things scheduled for today. But, it seems like it will all work out and more importantly I'm finally back on track to finish up my chemotherapy regimen.

I should be in the hospital through Thursday receiving chemotherapy and released on Friday!

--Russ.

Delays continue - I'm moving on . . .

Good Afternoon All:

It seems that this influenza thing has really derailed the progress I was making. Monday's culture again tested positive for influenza and so the final chemotherapy treatment is again on hold. While this is disappointing because I want to be done with chemotherapy and back into the normal routines, the delays had already made things uncomfortable with appointments that I had originally thought to be safe all of the sudden being made 'up in the air' pending test results. So just about every delay has a silver lining as I am told I'll be able to make some appointment that I had already committed to.

The current plan has me reporting to Hopkins on Monday, March 30 for another test to see if I have finally gotten rid of the flu bug. Perhaps that points to an April 1 (how fitting) admit date but at this point I'm done guessing. Instead, I'm doing the things I had planned to be doing at this point. I'm engaging more at work (even though I'm not going in yet) and getting into full swing with Nolan's baseball team. I'll continue to make plans and to hedge my bets as I make them. Eventually this last round will be underway, then completed. Until then I'll be my antsy self when I'm stuck in the house but at least I'll have several more things to throw my thoughts and energies into.

--Russ.

The Flu + Suppression of the Immune System = Delay

Good Afternoon All:

Sorry for not posting sooner the results of Thursday's appointment. As expected the team at Hopkins opted to give me the weekend to kick the flu out of the system before re-testing me. I am scheduled to travel back to Hopkins on Monday for an afternoon appointment. By Tuesday they should have an idea as to whether the influenza culture grows or not.

If nothing happens I should be cleared to get admitted on Wednesday. One single complication exists as I see it: Thursday's blood test also showed that my platelets dipped below the threshold again. They weren't far below the threshold and I would expect that as I started to feel better the platelet production started back up again, but . . .

Anyway, I feel pretty good that Wednesday is going to happen and I am looking forward to it. I'll keep you posted!

--Russ.

Cold? . . . Let's kick it up a notch, or two.

Good Morning All:

I'm on the precipice of a very rare Thursday Afternoon appointment. You might recall that I had a pretty bad cold over the weekend. That cold included a fever--a major concern for patients with suppressed immune systems. When I went into Hopkins on Monday they ran a number of cultures to try and isolate what was causing the fever. I also got another CT Scan of my chest and sinuses to locate sources of infection. Here is what I have learned so far from that battery of tests.

1. I tested positive for influenza. So I had the flu, not just a wimpy little cold.
2. I have pneumonia.
3. I have a brewing sinus infection.
4. My platelet levels finally got high enough for me to otherwise be admitted for the last round of chemo!

Needless to say they were not so certain that I should be getting that last round of chemotherapy on Monday and I was not admitted. They put me on an antibiotic and told me to come in on Thursday so that I could get a few doses under my belt before they re-evaluate me. When they learned that the influenza culture came back positive they pushed my appointment time from 11:00 to 2:00 so that I would encounter fewer patients and thereby lessen the possibility that I give the flu to someone with a severely suppressed immune system.

I've been down this road several times now and I know that when I walk in at 2:00 they will likely whisk me out of the waiting room and away from other patients ASAP and get me behind closed doors to contain my airborne virus(es). I can't help but appreciate the steps they take to keep bacteria and viruses from putting fellow cancer patients at risk and I am sure that I have benefitted as well (despite the 4 or 5 incidents I have had thus far). I will be interested in watching them 'do the math' on my physical condition today. Once I get the chemo my white blood cells will start dissappearing and my body's ability to fight illness will go with them. Even though my fever is long gone, my nose is running less and my cough less frequent and severe, I would not be surprised if they take a more cautious route and wait a little while longer before hitting me with chemo. This would give my body just a little more time to clear out any/all infections.

But perhaps they'll conclude that since I'm generally getting better, and I have the platelets to withstand the chemo, and will be under 24 hour care for 3 days (which wouldn't be a bad thing either) that they should proceed with my chemotherapy. In that case, I am likely to be admitted tomorrow.

In the end, I am very thankful for the expertise among the nurses and doctors at Johns Hopkins. They can weigh these variables using their long history with patients in my position and make a decision on my behalf that I know I will feel comfortable with. I will appreciate and accept the scenario where there is further delay, but I cannot help but continuing to hope that the delays are over and round 8 begins tomorrow (finally).

Update - The delays continue

Good Morning All:

Well, Friday came and went and still no hospital admission. My platelets hadn't gotten to the mandatory 60,000 level and the effects of a virus call into question whether I would have been admitted anyway as certain measures of liver functioning were thrown out of whack. I generally felt ok with the exception of a minor stomach ache--until this weekend. I now have a full-blown cold of some sort (I hope it isn't pneumonia again, something I'm sure they'll take measures to confirm or rule out today). I'm coughing so much that my ribs hurt.

I'll continue to go back to the clinic every Monday, Wednesday and Friday until they deem my body ready to receive this last dose of chemo. I suspect that it won't be today given how I feel, perhaps Wednesday.

On a more positive note, the baseball season for my son's team begins tomorrow! We're getting the kids out for a short practice--exciting!

--Russ.

Update

Good Morning All:

I woke up this AM realizing it has been a while since I posted. There really isn't much that has happened since my posting on Thursday so please try to stifle the yawns . . .

I went to Hopkins yesterday and learned that my platelets hadn't budged from the count taken on Friday. I'm tenatively scheduled to begin round 8 on Friday the 13th (!) but all that depends on my body continuing to make platelets to get me up to the minimum threshold established by my doctors. Since there really isn't anything more to do than wait I've been given off until Friday. It could be worse, though. I have energy and white blood cells so that means that I can get out to run errands, etc. which makes me feel useful and keeps me a bit busier--a very welcome circumstance.

Update

Good Morning All:

Just a quick update of a slightly minor but nice development from yesterday's trip to Hopkins. As you are all aware I have my eyes set on my final hospital admission to begin the 8th and final round of my treatment regimen.

The analysis of my bloodwork yesterday showed that my white blood cells are coming out of neutrapenia (I should be 'out of the woods' today)--the first step in me getting out of round 7 and into round 8.

Avid readers of my blog(s) should recognize that the platelets have been the slowers of progress recently and they may still be a bit of a bugaboo as they are still slowly dropping as a result of the round 7 chemo treatments. The question is whether they will drop low enough to warrant a transfusion that would provide a nice boost toward the threshold levels needed to start the next round or if I will start making platelets on my own in the next few days to where I will likely take a much slower road to getting round 8 started.

In any event, round 8 is before me!

--Russ.

Lasts

Good Morning All:

My neutropenic bones are back on the steroids as of yesterday and so the energy levels are spiking!

I wanted to give a quick update that all continues to go well. My counts are pretty low across the board (white blood cells, red blood cells, platelets, neutrophils--makes you wonder what I do have in my veins) and tomorrow is shaping up to be a long transfusion day--somewhere on the order of 7 or 8 hours to get red blood cells and platelets.

I wanted to share with you one of the recent joys as I finish my last A-cycle of treatment and move into the final B-cycle and cycle number 8 of 8. It is realizing that I have finished or will be finishing some of the more unpleasant parts of the process. For example, yesterday I had my last dose of Vincristine, a particularly nasty chemotherapy drug whose more sinister side effects is to cause feeling loss in my finger tips. For a time this feeling loss had extended to the first knuckles of each each finger. I still have baseline numbness in the tips themselves. There was always a chance that the nerve damage caused by this drug could be permanent but the fact that mine seems to ebb-and-flow based on the proximity to the treatment of the drugs seems to point that I should recover the feeling. Good thing, Audrey gets frustrated with how long it takes me to button the backs of her dresses.

Despite the energy boosts I get from these steroids, it also naturally causes sleeplessness. I get up in the morning with lots of ideas and the energy to act on them but you should see me crash around 9:00. This is my last 4-day dosing cycle of these steroids--I will take great joy in throwing away my empty pill bottle on Thursday afternoon.

These are the most recent 'lasts' that I can point to. I'll be making mention of them as they occur so you can all share in the satisfaction of these successes even if it might not mean quite as much to you as the larger milestones achieved so far.

--Russ.

Two divergent paths

Good Afternoon All:

Again, I must apologize for the time between posts. I dissassembled most computers in the house to make room for some electrical work to be done and just got them put back together again last night. Appointments and schedules since Tuesday this past week have been pretty whirlwind and so finding a few moments to write a worthy post has been difficult. There is a topic of substance that I want to address with this post and I didn't want to short change it while balancing a laptop in the outpatient clinic and dodging nurses and bags of red blood cells.

On the eve of my last post my support team lost another member. Tuesday night my paternal grandmother, Martha Flickinger (she'd been divorced and remarried, hence the name difference), died of cancer. Like most cancer patients and survivors I have a fair amount of family history of cancer. This is my second grandparent to die of the disease and 3 of 4 have had more than one form/occurrence of the disease.

Grandma Flickinger had had breast cancer some time ago and some time after I was diagnosed cancer was found in her bladder. We spoke on the phone somewhere between my diagnosis and the time while her diagnosis was still pending. She conveyed at that time the conviction that she again had cancer based on what evidence existed--true to the outlook I've tried to maintain during treatment I took the optimistic route and suggested other possibilities. Needless to say, my grandmother and her medical team knew more than I did.

I've done a little bit of reading during my treatment about the mental state of patients. In one book the author speculated that many medical professionals simply do not wish to live to a ripe old age. They have spent a good portion of their lives witnessing the broad spectrum of human health and spent an inordinate amount of time treating those that were in the worst shape. The author continued to propose that for this reason health professionals when faced with a diagnosis like cancer would be more apt to resign themselves to the disease. It is an interesting hypothesis and one that I suppose could apply to my grandmother as she spent some time as a nurse. Perhaps it was from this sort of vantage point that she made her decision to forgo treatment for the cancer in her bladder or perhaps she simply didn't have the energy for the fight. In any event, she made her decision and the point of no return for receiving treatment came and went. She was cared for by Hospice and visiting nurses and she passed away in reported comfort in her own apartment Tuesday evening.

Since learning of her diagnosis and her decision to not receive treatment I have been wrestling with my grandmother's circumstance. The mere fact that our diagnoses were so close chronologically has created a link in my own mind between her experience with cancer and my own. While we may have started from similar starting points, our paths were divergent from the outset. I chose to be treated and resolved to beat the disease, she opted to forgo treatment. I have continued to keep my head up and to look to the future while she prepared for the end of life. It should come as no surprise, then, that our paths lead to very different places: while I begin to prepare for post-treatment life my grandmother's came to an end.

And yet, from the time I learned of her decision to not seek treatment the link I felt to her cancer diagnosis was a bit singed. There was always a nagging thought that her decision could have some weight or bearing on my outcome in some cosmic or karma-based way. The inevitablity of her death just seemed hard to accept, reconcile and to witness while I fought so hard to move in the other direction. The understanding and support I felt for her decision could not have jived with the attention that I was paying daily to getting better. For that reason we did not interact much during her final months. Prior to this we didn't call or write each other regularly though under other circumstances I feel certain that I would have reached out to her a bit more. Instead we kept tabs on each other through reports from my father.

These details come across as cold as I read them but I think both of us were rightly introspective with regard to the other's situation. My recovery from cancer and my grandmother's death from it are journeys that require stamina, courage, and rely on periodic displays of grim determination to get through the trying times. The strength for each of us to move to our desired outcomes simply would have been hard to come by if we kept running back to the point where our paths diverged to check on each other.

My grandmother was rooting for me to get better in the same way that I supported her decision not to. Along with the sadness that comes from her dying there is also a sense that part of my attention that had been wrested away out of concern for her has been released to return to the business of completing treatment and being cured of cancer. So perhaps the link between us is there still--out of her decision to die from her cancer perhaps I have been given the final burst of strength and determination I will need to complete my course of treatment and to achieve a cure for mine. It seems to me that I can honor and remember her best in this way and so I have resolved to do just that.

Jitters and tribulations

Good Morning All:

Got a nice surprise yesterday when I learned that I was going to sleep in my own bed last night. I got to go home around dinner time yesterday instead of lunch time today--a very welcome turn of events considering out other recent admissions have gone!

I do need to apologize for the radio silence though rest assured it comes with good reason and not because anything untoward has happened to me. As it turns out either the mother board or the hard drive has ceased to operate on my new laptop and so I was without a way to post to the blogs or check e-mail from about Saturday on. Since I'm home and have some white blood cells with which to operate I will set about getting this rectified ASAP.

By way of update, with my release from the hospital yesterday I am now down to just one remaining hospital stay and one remaining spinal tap. My out-patient regimen will continue into March and I will be moving into the maintenance program that will last me a couple of years when the intense treatments conclude. I am very much looking forward to replacing the frequent trips to hopkins, tubes in my chest, and volume of medicine with just a few pills and sporadic visits to the folks in Baltimore.

Finally, just a bit of humor for those who live or work with me. One of the pills I get from Hopkins during the A-Cycles (of which I have no more!) is a steroid. One of the side-effects is that it can make one excitable or jittery. I took my last dose of those pills last night and man you should see me this morning. I can hardly type or sit still--runs very counter to my normal demeanor. I can only imagine what I look like in my own home: standing up-sitting down, upstairs-downstairs, blogging-getting coffee (like I need that right now!). At any rate, much better being jittery here with some room to roam than a small room in Hopkins wondering when I'll get released!

--Russ.

Let me check my calendar

Good Morning All:

Chemo is underway, already have two treatments under my belt and will get another 6 or so during my in patient stay. By the time I leave here early next week I will have crossed off all but one hospital stay and all but one spinal tap.

As I wrote in an earlier entry, it is time to get my head up and looking to the future. For now, that tends to be the next few months as we try to plan for my return to work, our summer plans (vacation, summer camp for the kids), and Audrey's first day of school. In this process I have been surprised by a very seemingly innocuous occurrence that has meant quite a bit each time it has happened over the past couple of weeks.

As time has gone by and we've drawn closer to the end of my intense chemotherapy treatment we've also drawn closer to events at work and at home that I SHOULD be available for. It has been quite a downer throughout all of this to routinely have to reply to invitations that I could not possibly predict until much closer to the date of an event whether or not I would be available. I tried making educated guesses and was burned about as often as I was right. I was left to simply make very late RSVPs or, if pressed for an early answer, to decline with an explanation unless I was sure I'd be available.

Now, we are starting to approach events that are to occur in mid to late March. My delays in getting started on round 7 throws that timeframe into a bit of a shadow but my availability is clearly shifting from 'unlikely' to possible and even probable. This is a very welcome change and a source of optimism for me as the days go by.

This isn't to say that there isn't still trepidation about leaving the safety net of having routine treatment from the top notch health professionals at Hopkins. I think at this point, however, there are so many positive changes that come from a return to 'normal' (I will still be taking chemo medicine orally and have periodic follow ups at Hopkins) that there could be more health benefits in the form of positive 'vibes' to be realized that go beyond the pumping of medicine into my body and I'm ready to realize those benefits. I guess I could say I'm ready to join my mates inland on the island of Sicily--are you all ready for me?

Made It! Round 7 under way

Good Afternoon All:

The delay is over! My platelets crept over the 60,000 threshold and I was promptly whisked to a hospital room to begin round 7 of treatment.

This marks the beginning of a series of 'lasts'. This will be the last cycle A regimen that I will go through, my last hospital stay scheduled for 5 days, etc. I am definitely excited to be at this point finally.

I don't think that I actually posted an update regarding my little case of pneumonia. I had a CT Scan on Monday to re-assess how my lungs were doing and I learned that there was no further sign of pneumonia. I have a little bit of a lingering cough but certainly nothing to worry about.

--Russ.

Milestones

Good Morning All:

Despite being required to report to Hopkins every day during the past week it could not have worked out better. I saw a particular low point two weeks ago when I had to ask Nolan which he would rather have me at home for: his actual birthday (Monday, Feb. 9th) or his birthday party with friends, etc. on Saturday, Feb. 14th. Of course, I wanted to attend both but the way things were shaping up it appeared I would likely miss one of these and might have the opportunity to sway the start of the round 7 hospital admission to make certain that I could be around for the one that he chose.

As it turned out my counts dipped and the start of round 7 needed to be delayed and is still in delay. It appears that tomorrow could be it if my platelets come around. In the meantime I was able to be home for all of Nolan's birthday.

In years prior to this one, birthdays (mine and others) were seen as special dates during the course of the year that required reservations on the social calendar, perhaps some planning and work to make them special, and were often seen more for the chores they create than the milestones they are meant to celebrate. This is yet another 'thing' that has changed for me. It wounded me to have to ask Nolan to prioritize one facet of his birthday celebration over another because I might not be available for both. I was immensely relieved when I learned that I would attend both and would have the white blood cells to attend the kids' birthday party without sneaking my neutropenic body in.

This year I was able to enjoy the event of Nolan's 8th birthday in a way that I probably have not enjoyed his birthday since perhaps his first one. I spent less time worrying about how much the event cost, whether the kids were having fun, getting hurt, allergic to peanuts, going to get their goody bags, etc. In place of that worrying I watched Nolan in his element--Running around with his friends, smiling, laughing, and turning 8. I played host to the parents that came with the kids and visited with my parents and in-laws. I enjoyed myself immensely and was pretty tired afterwards.

This is the angle from which I want to watch all of the milestones. We celebrate them to celebrate them, not to create work for ourselves or to spend the money that we budget for such things. This is not to say that I won't do the chores involved in planning the events or spend the money to have them but the chores and bills will no longer BE the event as they have been in the past. Instead, the focus will shift to where it should have been all along--creating an opportunity for all attendees to celebrate in a memorable fashion. This would include the hosts who should be able to report that they celebrated a milestone rather than saying they 'hosted a party' when all is said and done.

I've got lots of celebrating to do and I plan to become quite accomplished at it.

--Russ.

Complicated

Good Morning All:

Trying to get a quick update in before I head out to Hopkins this AM. As I wrote in my most recent posts, I am continuing to go to daily appointments at Hopkins to treat a couple of infections--one in my catheter and another that appears to be the beginnings of pneumonia. No one at Hopkins seems terribly alarmed by either so I will continue to take my cues from them.

As it turns out, just before leaving Hopkins on Tuesday my nurse noticed a change in my catheter site and called over the charge nurse. After a brief consult they decided that my catheter was starting to slide out of place and that it would need to be replaced. Yesterday I had a long day at Hopkins capped off by the minor surgical procedures to pull out the old catheter and replace it with a new one.

While it makes perfect sense to me, the nurses looked at me as if I had sprouted a third arm when I suggested that getting a new catheter makes short work of the infection that had grown in the old one. In fact, I'm going to Hopkins today and the only item on the agenda is for me to receive the antibiotic treatment for the catheter infection . . . strikes me as odd, but what do I know.

I still have the tell-tale cough from the pneumonia and I'll be getting a follow up CT Scan tomorrow to see if how treatment of that condition is going. We are still looking at a Sunday or Monday admission date if the platelets cooperated. Since I was undergoing some surgery yesterday I received an unexpected boost to my platelet count in the form of a transfusion (so I didn't bleed to death)--we'll see if my body welcomes the new platelets and builds on that count or if they begin to dwindle due to infection, lingering chemo, etc.

--Russ.

Update

Good Afternoon All:

Just banging out an update while sitting here at Hopkins . . . I'm continuing to receive daily treatment for the infections that have been discovered. Other than being tired from the decreased opportunities to sleep, I'm feeling better with less coughing and sneezing. My counts continue to slowly recover and I'm no longer neutrapenic. The only sticking point are those pesky platelets. They continue to fall so I suspect that I'm in for a fairly lengthy delay as I wait for those to reverse direction and then climb to a level that will support the next round of chemo.

To some degree I'm OK with a little bit of delay here. Nolan turns 8 tomorrow and his birthday party is Saturday. I'd hate to miss either day and will be conflicted if we approach Saturday and my counts are such that I might get admitted. It might be the one time that I ask them to delay my admission date . . .

--Russ.

Well, now I've gone and done it. . .

Good Morning All:

I'm posting this AM from the outpatient clinic at Hopkins. On Tuesday I told you all that I had a cold. In the early evening hours of the prior day my temperature sneaked above the 38-degrees celsius threshold (100.4 degrees farenheit) for being considered a fever worth worrying about. I posted a 38.1. This happened in about the 8th hour of a 9 or 10 hour day as an outpatient. They halted my blood transfusion fearing that I was having a reaction and they drew blood so they could culture it and learn whether there was infection worth worrying about.

On Tuesday evening I received a call at 10:00 Pm from the attending physician who informed me that one of the cultures had started to grow and he was toying with the idea of having me come in that night! I was able to dissuade him since my temperature had not since crept above the 38-degree threshold (it hadn't crept above that threshold prior to that measurement either) and since I had an outpatient appointment scheduled just 11 hours from the time of his call.

Wednesday's appointment saw me in radiology for a CT scan of my chest and sinuses (looking for sources of infection) and receiving a blood transfusion since they ruled out my having a reaction as the source of the elevated temperature. Also while I was there more details began to surface about the infection I have. From the culture they are pretty certain that I have a bacterial infection in one, or both, of my Hickman lines. This involves one regimen of antibiotics. Additionally, the CT scan revealed that my lungs had a "pre-pneumonia" condition where fluid was beginnning to build--no doubt from the cold I had been suffering through. This involves a second regimen of antibiotics.

Both of these regimen require medication that is infused intravenously and a new set of procedures, skills, etc at home. Marla and I will be getting less sleep than normal over the next two weeks so if we look or sound tired and/or grumpy please cut us some slack.

For what it is worth I woke up this morning having no elevated temperature at all, less of a runny nose, and fewer coughs. Hopefully the cold is pretty well behind me and the treatment of these infections is as academic as the nurses make it sound . . .

--Russ.

Update

Good Morning all:

Just a quick update: The wait for my counts to return continues. I believe that I am on the verge of that recovery though I also suspect that I will have the normal delay in waiting for my platelets to return so that I might start the next round of chemotherapy.

I've been getting a fair number of transfusions (platelets and red blood cells) recently and I can see that my body is handling the B-cycle of treatment less well than it did the first or second time. My chief complaint at this time, however, is that I happened to wander into a cold virus while I don't have the white blood cells to combat it. I suspect that its a wimpy little cold that will quickly be vanquished once I've got WBCs but for now its running rampant and causing the nose to run, sneezes, coughs, headaches . . .

In any event, I'm trying to follow doctor's orders and to drink fluids and get plenty of rest.

--Russ.

Surgeon General's Warning: Beware of the irony . . .

Good Morning All:

I'll do better than an update today. My apologies in advance to the smokers who read my blog--this one isn't intended to sway your decision to smoke but perhaps I might be happy if it did . . .

The parking garage for the cancer center at Hopkins is located under the building itself. Its exit empties into an alleyway of sorts and leads to a traffic circle and the city streets of Baltimore. As you drive up the hill to this alley and stop to look for car or pedestrian traffic it is very hard, as a cancer patient, not to take notice of the activity across the street: more on that in a bit.

In the passenger seat in the car leaving the garage I am always wearing a mask. I have been instructed to wear that same mask in the hospital because people with viral and bacterial infections roam the hospital--a danger for me. Leaving the hospital, whether in a car or on foot, I must wear the same mask. There is construction all around the hospital and this stirs up dust, dirt and ostensibly microbes of some sort that I am to be wary of. As we drive through and out of the city I keep the mask on because city buses belch out plenty of potentially harmful fumes and the construction exposure continues until I'm about a mile or so out of the city.

. . . And so there I am in the passenger seat of the car emerging from the parking garage located under Johns Hopkins cancer center wearing my mask to prevent just about anything harmful from entering my depressed system. Across the street is always a handful of people smoking. Typically there's a person or two wearing hospital scrubs or even a doctor's white coat, others are wearing the street clothes of hospital visitors. There's a bench there and an awning for them to stand under and one of those tall tubular receptacles for cigarette butts. Its become a common quip for me to make as we wait to turn left: "Smoking outside the cancer center."

Its really only half a joke. I can't help but feel a bit down as I ponder the unfortunate irony of the same people who routinely see the worst of the worst cases of cancer being dragged by the scruff of their neck by an addiction to inflict the same damage on themselves that they struggle to treat day in and day out. I often catch the eye of someone as we drive by and I can only imagine what they think as they watch the cancer patient wearing the tell-tale mask drive by following an outpatient treatment. Is it learned indifference that keeps them lighting up? Do they doubt the research that links smoking to cancer? I just can't help but wonder.

After probably 50-100 visits to Hopkins now I decided to write this as we came home last night because I saw something there at the smokers bench that I had never seen before. There is at least one patient that I cross paths with frequently in the outpatient clinic who smokes. I've heard nurses talking about his smoking habits and how all have tried to counsel him to give up the habit. Sometimes they'll be looking for him and he'll have disappeared and they naturally wonder/worry that he's outside smoking. I believe that I've seen him there among the smokers on at least one occasion dressed in his street clothes.

Last night, however, as we turned left into the alley there he was crossing the street in front of us. He was an inpatient this time--betrayed by his hospital gown, wheeled IV Pole with tubes leading from bag to body, slippers, and the ever present mask. He had a coat on over his gown and a stocking cap on his bald head but he still looked cold. This time as I watched him lift the IV Pole over the curb I had to wonder what the other smokers were thinking. If I envisioned myself with my mask as a stark reminder of what was possible. What was this guy's presence going to be for the rest of the smokers? How could it be possible to ignore such a sight?

And for the patient, other questions arose. Why wear the mask at all? It can't be because he wants to follow doctor's instructions in an effort to keep matters from getting worse. How must he feel as he makes that trek? I have to assume that it feels much like he's being led to the gallows as he wanders through the hospital to do more of the same damage that probably led to his hospital admission in the first place. Does he ever question just how much effort his care team is willing to give his case if he seems unable to change this habit and simply undoes the work done by his doctors and nurses? I know I questioned that very thing last night.

In the past I have viewed the smoking habits of others as largely none of my business unless they were blowing smoke in my face. Even then I was probably more tolerant than most. While I still am not a likely person to launch a crusade against smoking or to counsel smokers at length about the damage they are doing to themselves something has changed for me. I now know what the treatment of cancer entails. I've seen patients in very rough shape, skin-and-bones terminal cases, and very young adults and children who don't have the strength to walk out of the hospital. I know what it feels like, first hand, to put just about everything in life on hold to receive treatment and to have the constant worry about whether the treatment is working. These are sights and experiences that I would not wish on anyone and would be likely to crusade against.

The sight of the cancer patient crossing the street last night brought into stark reality for me the intersection of smoking and cancer and the confounding, ironic grip that addiction has on those who smoke outside the cancer center.

Update

Good Afternoon All:

I'm writing from Hopkins today. I'm here as an outpatient and today is one of the few times where I am happy to be here instead of at home. My last appointment was Tuesday as the snow was starting to fall and the weather reports were sounding pretty grim. My blood counts then showed I was closing in on the need for a blood transfusion but hadn't crossed the threshold yet. So, they sent me home without a transfusion on Tuesday and we beat the weather.

However, by this AM I was pretty wiped out. When I need a transfusion I get winded just having a phone conversation or going up/down stairs. This morning I needed to sit down a while after taking a shower!

I came into the outpatient clinic pretty much announcing that they would be giving me blood and on my say so started the process of ordering a pint of A-positive for me. I'm receiving that pint now and will get another and probably a bag of platelets too. It'll be a long day but I suspect that I'll feel quite a bit different when I go to bed tonight than I did when I woke up--and that's a good thing.

These counts dropping are normal not any cause for alarm. I suspect that my white blood cells should be plummeting soon as well. Once this happens and I recover we'll be on the way to round 7!

--Russ.

Something a little more light-hearted

Good Morning All:

As I watch a little bit of unexpected snow drift down this morning I thought I'd share a little bit of news that is less weighty than blood counts, hospital delays, chemotherapy . . .

We're talking hair. I have to admit that I've gotten a little used to not having any hair on my head though the feeling of the warmth escaping from my scalp continues to be uncomfortable and is the primary reason that I don't tend to simply walk around bald. I also have started to joke about it with my primary foil being Audrey. Last night, for example, she was trying to put Marla's hair in a pony tail and I invited her to do my hair next. She thought that was very, very funny and so did I.

While I've been assured that it means nothing by the doctors I'd like to announce that my nice clean shave has come to an end however. One of the actual benefits of having chemo was that for a time I had no facial hair and none growing. I had a nice smooth shave without any of the daily activities to make it so. About 3 weeks ago that ended. I looked in the mirror one morning and there was a blonde(I'm claiming blonde) beard growing around my nose and mouth. I actually had to shave! My facial hair is back, oddly enough, though it grows more slowly than it did prior to the chemotherapy and it is no longer blonde but the dark brown it had always been.

Marla also pointed out last night that my eyelashes are growing back. This actually strikes me as a little odd as they haven't really been gone that long. I think I noticed them falling out in earnest just a bit before the beard reappeared.

In any event, I'm assured that there is little to be read in the comings and goings of hair for the chemotherapy patient. I choose, however, to see these as a minor sign of the change in my focus from treatment to maintenance. After all, just because we can't explain how or why these things occur does not mean that they are unimportant or without cause.

Finally, since I've been diagnosed my co-worker Marie has been asking for a limerick. It is a lesser-known factoid that I've got a penchant for writing limericks when something strikes me as funny. There hasn't been much to write limericks about thus far but I think we'll give it a go on this topic:

The Returning Facial Hair Limerick
With no beard or eyelashes flowing
and the hair on his head not growing
Russ looks at his stubble
and begins to mumble--
I can't tell if its coming or going!

--Russ.

Update

Good Morning All:

I'm finally going home from round 6 today. This one seemed particularly long because, well, it was. For a B-cycle treatment this one spanned about as much time as it could and so I am now very eager to return home to the wife and kids.

We knew when I came in on Wednesday for an out-patient blood check that if all were in order they would try to admit me. As it turns out this became possible and so I stayed.

But there were delays in getting started and resulting timing issues throughout this stay that resulted in a normally three day cycle keeping me here beyond 5 days--sigh. Just glad to have it behind me and to be on the verge of going home.

Positive notes: Round 6's hospital stay can be crossed off the list as can spinal tap number 10. I still feel good and strong and upbeat (when I'm not grousing about hospital food)--and to the best of anyone's knowledge still cancer-free.

--Russ.

Running through the bag

Good Morning All:

So, I woke up this AM at Hopkins. My platelet counts crept above the minimum threshold yesterday and they scrambled to put me in a room. So here we go--good to keep this moving into round 6 of 8!

Since I received the positive news on the bone marrow and CT scans I've noticed a very real shift in my perception of these hospital visits. In the early rounds I was carried to outpatient appointments and inpatient stays by a very clear sense of purpose that was fueled by the immediate threat of the spread of cancer. While it is eerie to use words with positive connotations to describe it, the uniqueness or adventure of undergoing treatment kept me moving.

Now that the cancer has been beaten back I'm left to finish out the treatment and start a 2 year maintenance program to keep it away. This is no longer a sprint to get me out of danger but an endurance race to long-term health and I need to shift my attitude accordingly. What is required of me now conjures up a lesson I learned in little league baseball and struggled to teach my team last year. . .

Many who have not played baseball may not be aware that after a runner hits the ball they are able to run beyond first base after touching it--we call this 'running through the bag'. The benefit of doing this is that the runner does not need to slow down in order to come to a stop on the base itself. Instead they can use their full speed to get to the base and beyond in the hopes of being safe at first and to have the ability to continue around the bases to ultimately score a run for their team.

My 7 and 8 year olds last year practiced running through the bag at each practice. They loved to run and it was a good fundamental lesson for them to learn. But they never really translated that practice to the game. Once they put on their baggy uniforms and big batting helmets they would forget to run through the bag and come to a slow stop on first base after successfully hitting the ball. I guess I know one drill we'll continue into this season!

Running through the bag has long been a personal analogy of mine for seeing thing through to the end in the proper way. Doing this is not easy to learn, seems counterintuitive at times, and requires establishing a new habit for one's self. In short, there are many who never learn it and plenty of times where those who have learned to run through the bag simply neglect to do it.

Of course, now is not the time for me to short change myself or my family by giving any less to the recovery/health effort. So, with the great start up the first base line that I've gotten I only need to keep running hard, touch the base and continue on.

--Russ.

Platelets are dragging

Good Inauguration Morning All:

First of all, congratulations are in order to Brian Reeve and his wife Stephanie on the birth of their third child last night. Brian is training to run in the Leukemia Lymphoma Societies half marathon. A link to his fund raising site appears on both the Blogger and Caringbridge blogs. Can you imagine getting up at the crack of dawn feeding and changing the baby THEN getting up to run 7 miles?! Brian deserves your support (on the fund raising--he's on his own with the diapers).

An update from yesterday . . . my platelets are on the same slow boat that they had been on in prior rounds. I needed to recover to the 60,000 or 100,000 level in order to receive treatment. I was at 45,000 on Friday last week. My counts yesterday showed only a modest improvement to 49,000. The current plan is to have me recover for a couple more days and return on Wednesday with an overnight bag packed. If I'm able to hit the magic number then I may be admitted on the spot. Otherwise, I'll return home to make more platelets--however one accomplishes that.

I'm still ahead of schedule despite this delay so I'm generally upbeat and looking forward to today's festivities which I'll be sharing with Audrey and Nolan.

--Russ.

Update

Good Morning All:

Probably the biggest news that I've got to share is that I've got no real news to share. The good news of the past week-or-so continues to dominate our thoughts and actions. During the week my blood counts crashed and recovered so that I have a weekend with the kids where I can follow them where they go. That meant I got to run to gymnastics yesterday and we had a nice gathering last night at a friend's house.

My platelets were casualties in the crash/recovery process so those will need to come up naturally before round 6 begins. We are hoping that this is happening now and that my check of blood counts on Monday will reveal that I am in position to be admitted on Wednesday--several days early by my count!

--Russ.

Update from yesterday's meeting

Goodmorning All:

Figured I would provide a brief update (and not the answers to all 30 questions I managed to get answered!) from yesterday's meeting with my primary doctor at Hopkins.

I didn't anticipate that I would come away with much new information about my diagnosis/prognosis etc. I've pretty well researched that as much as I care to at this moment. I did learn a bit more about the difference between Acute Lymphoblastic Lymphoma versus the more common diagnosis with the same initials--Acute Lymphoblastic Leukemia or ALL. I had thought the difference was the advancement of the disease into the bone marrow. Where my marrow was marginally affected (less than 25%) at the time I began treatment I believe I had read somewhere that had it gone above the 25% mark I would have been diagnosed with ALL. As Dr. Connolly explained yesterday, however, it is more of a chicken-and-the-egg sort of thing. The current thinking on the difference is the genesis of the disease. Did it start in the lymph nodes (where the primary infection was in me)? Then its Lymphoma. If it is in the marrow and blood (with little or no infection in the lymph nodes, normally) then it is Leukemia. Hardly matters much as the treatment regimen for both is the same.

The best news is that my 8 treatments are pretty much it for hard core treatment. There is talk of possibly using a new practice of a radiation treatment regimen on the lymph nodes in my chest just to make sure we're pushing the cancer cells over the edge--but that all needs to be weighed and discussed. Otherwise, my dresser-top full of pills will be replaced by three pill bottles with only one pill being needed every day. My inpatient trips to Hopkins will end after round 8. My outpatient trips to Hopkins will be limited to some intermittent follow ups to be certain that I'm not having lingering proneness to infection following the chemo regimen and then will dwindle to one outpatient visit every 3 months. I'm still on track then to return to work in some form by mid-March once the blood counts recover from round 8!

My Hickman catheter which limits my physical activity, my showering habits, requires Marla's new found nursing skilss most evenings, and is an annoying daily reminder of all that I am enduring will be able to come out soon after round 8 (once we determine that I'm beyond risk of needing intense infection treatment or something that could still use the catheter instead of a traditional IV).

I've been cleared to my satisfaction that I will meet my goal of coaching Nolan's baseball team and I've already made that commitment to the team in an e-mail last night. Additionally, it seems that with my Hickman likely able to come out in late March or early April, my ability to actually PLAY baseball seems that much more probable.

The risk of infection ends following round 8 so I'll be able to eat any food I like, be around people, go to sporting events, movies, the mall, when I choose. We'll also be able to start thinking about a puppy to replace our dearly departed Bungo.

I think Marla put it best on the way home yesterday when she said that, by comparison, what awaits us after round 8 seems almost like Club Med.

I do still need to point out the stark reality that while cancer seems to have left my body the yeoman's work will continue for YEARS after round 8 to ensure that it does not come back. The odds of relapse (at least looking at some somewhat dated reports) are not insignificant and so I will remain in some form of treatment for another 2 years.

In all, it is nice to shift the focus of my eyes from where I stand today to somewhere further on the horizon. Right now we're looking squarely at the next several months while taking peeks at the next 2 years. Marla has instructed me that, at 36, I'm committed to another 49 years--putting me at 85. I guess I'd better get my head up a little further . . .

A newfound aversion to data . . .

Good Morning All:

Before I get started I posted a picture that was taken from my Mom's camera while I was doing my last post. I get a big reaction to the pictures so I figured I'd post it. Aside from me looking bored it is a pretty good picture. I think you will all agree I am still not frail and looking pretty hale and healthy. For Blogger readers, I edited the prior post to include the picture. For Caringbridge reader I added the picture to the 'pictures' section next to the one with me and Santa.

This afternoon Marla and I travel back to Hopkins to meet with Dr. Connolly. This meeting is a follow up to the positive test results that I've been able to report recently and shifts, in my mind, the focus from the here-and-now to the what's-next.

As I've mentioned in prior posts this is a sort of anxiety-laden process as I am going from a patient who is being closely monitored to one that is being released back into the cruel, cruel world eventually to experience come-what-may. I suppose it is akin to that first big push while learning to ride a bike or landing your first plane.

As I lay awake at 3:30 this morning thinking about today's meeting and attending to the questions flooding my head I was drawn back to the information I read in a couple of articles dealt with my diagnosis and the treatment regimen that I am on. I thought, on one hand, that I might share some of that information in a blog post--perhaps even today's. But, I scrapped that idea and here's why:

We've all heard that we need to be educated consumers of information on the internet. While typically that refers to trusting fully the sorts of things we read on Wikipedia, for a patient facing a serious illness like cancer there is a commensurate amount of information to match the demand for information. With all there is to wade through, scientific, opinion, and the ever-present, well-disguised sales pitch for miracle drugs one can be mislead by misinformation or mired in irrelevant information.

The irrelevant information is harder to discern because it is often reported in those sources we might otherwise come to trust--the scientific. It took me some time to relearn (as it was part of graduate education) that just because it is reported in a scientific journal and it is data, what I read may not have any relevance to me. I believe this is broadly true when it comes to the data one might read on cancer statistics and know it to be true for my specific diagnosis. What gets reported in these articles are often the results of clinical trials or are meta analyses based on 'linkable' data. The more complete and more predictive these data are the better able they will be able to serve as a crystal ball for what may happen with me.

Clinical trials themselves struggle to rise to this level of long term predictive value because the sample sizes are based on the need to prove that a drug, or drug regimen, serves as improvement over existing treatment options. This includes some measure of sustained improvement but I'm looking for a crystal ball that looks out over the decades--not to 5-year survivability statistics. Additionally, while the teams that collect these data may continue to collect survival rates, they are also always seeking improved treatments and other trials to conduct. As such, the focus changes and the long-term collection of data may be either stunted, abandoned, or at the very least, lost amidst the discussion of the next best treatment option.

To provide an example of what I mean I can hearken to some of the lessons I learned when I exposed myself to these sorts of articles last time. I know that several of my 'experiences' point to an increased likelihood of a prolonged remission/cure. Apparently, the existence (and obviously, cure) of a mass in my chest is correlated with better survival rates. Additionally, so is my quick response to treatment. However, my age is just over the threshold for being a negative factor. I was 35 when diagnosed and turned 36 just after my first hospital admission. I didn't like to learn of any 'detractors' when it comes to long term survivability and I stewed over this information for quite some time (though it was more disturbing that everything ended with a 5-year horizon--"Hey we got you to 5 years, success!"). It wasn't until I put in perspective that the 34 year-olds were lumped in with the 22 year-olds (or something like that), and the 35 year-olds were lumped in with the 50 year-olds (or something like that), that I realized that there was at least room for question. Certainly, finer factor analysis is possible though in the sample sizes often reported in clinical trials we would quickly get into small sample sizes and the flakiness of data that comes along with them.

Since I felt strong, healthy, upbeat, and young coming into this process and continue to feel this way during the process I have decided to ignore that 'detractor'. Heck, my WII Fit age (sort of a fitness level measure equated to 'age') once dipped below 30--that's got to count for something?! So, this brings up the larger issue and the reason that I will not be revisiting those articles any time soon. While the information they provide is important for me to know, understand, digest, as part of being an active participant in my own treatment, it is also important to the patient to know and understand that the number of factors involved in long term survivability of ALL (the lymphoma version included, and I'm sure other cancers and illnesses as well) hinge on so many factors, many of which are unknown or only suspected at this time, that it is impossible to read an article and get a sense of where one stands. Despite what is possible via statistical analysis, it would be a tall order to expect the author of a scientific journal to adequately discuss his/her positive finding in an effective manner AND for them to try and tease apart and discuss effectively all possible permutations of these factors and what they might mean for long term survivability (assuming long term data exists at all).

As a result I have decided that I need to lean on the artistic side of the cancer treatment process. There is a reason one makes the trek to top medical institutions such as Hopkins or enrolls in a clinical trial (I have not enrolled in a clinical trial to date, by the way) and it is to avail oneself to the expertise of the physicians who have seen the permutations of factors and have the exposure to the number of cases necessary to have 'suspicions' about the as yet unconfirmed factors to long term survivability. Their data is experiential and when one is interested in something a bit more 'concrete' than a 5-year survivability rate, this is where he/she must turn.

This is the foundation of the long list of questions I have for my meeting with Dr. Connolly today. I'll be curious to know just how far she'll indulge me in my roundabout effort to unravel her 'artistic' interpretation of my case.

The end of rock stardom

After Thursday's eventful news I've been wondering what to write next. For all the hoopla of last week's revelation, there is still the business of getting through the full 8 cycles of treatment. Today, I arrived unceremoniously at the outpatient center at Hopkins and went through the same rituals of blood tests, a pending blood transfusion (as I write this), and waiting, waiting, waiting.

I did receive word that my remaining 3 spinal taps will be spread over the remaining treatment cycles. I'm happy for the temporary reprieve in needing to endure another one in the coming days.

Otherwise, its another day at Hopkins and I'm not nearly the cancer patient/rock star today that I have been since late last week. "Keep marching soldier. The front is that way."

On the beaches of Sicily

I've just finished making my through a book on what I suppose might be the Mediterranean theater of WWII. The book focused on the US efforts in North Africa and Italy all leading up to the allied invasion of Normandy.

What struck me as I read the accounts of the early battles was just how steep and important the learning curve was for the US forces, and even more notably, how complicated. Each time the US hopped from continent to continent to establish a new front against the Germans there was a need to 'come ashore'. Infantry and tanks were packed into boats and deposited on the beach. So much care and planning was taken to try and make certain that the troops could just overcome the odds enough to get to that point--establishing a beach head. It was very evident from the portrayal I was reading, that failure on this point rendered consideration of any other operations moot.

Late yesterday afternoon I received a call from Doctor Connolly. I had almost forgotten that she owed me some news and before I could even register who was on the phone with me she had alerted me that my bone marrow biopsy had come back CLEAN! The sense of relief I felt at that realization was something so unique to me that I won't soon forget it. After confirming with her what I was hearing I hung up the phone I did an embarrassing jig or two, let out a yell and set about calling family. Needless to say we are all relieved and overjoyed to get this news--between the CT Scan results and the bone marrow biopsy I could not have asked for a better outcome for the results of just half of my treatment protocol.

Wiping out the cancer from my lymph nodes and my bone marrow is like hitting the beaches of Sicily (in WWII, not today, I assure you). So much energy, thought, planning, and effort has gone into making that happen that in hindsight it almost seems now like success was a foregone conclusion. But what if . . .

I'd like to thank everyone who has done anything to sustain my family and I throughout this. We have not had nearly the opportunities to say thank you as we'd like and so we are left to hope that all of you know how thankful we are. Even more importantly, I'd like to invite you all to keep up with me on my blogs. My clean scans are a start, not an end. For all who have remarked on my spirit or attitude, understand that I have drawn considerably from the influence of those around me.

And so now we've landed--the work isn't done and the battle, let alone the war, is not over. I've got three more rounds of chemo to pour into my system and between now and then the team at Hopkins, my family, and I will work on the remaining steps to make certain that cancer does not return.

So now that we're standing on the beaches of Sicily, who's going inland with me?

--Russ.

A hodge-podge of updates

Good Morning all:



Before I get into my boring updates I want to alert my readership to another fundraising activity for the Leukemia and Lyphoma Society (my newfound favorite charity). A friend of mine has entered himself into a half-marathon (as long as he doesn't expect me to pick up the slack on the other half!). Please feel free to visit Brian's donation site: http://pages.teamintraining.org/nca/shamrock09/breeve To borrow from his thinkning, if I can weather the chemo and he can get up to run a few miles perhaps the readers of my blogs can band together to make contributions that will make a difference in finding a cure. Thank you for your efforts, Brian and I'm touched that my situation serves in part as rationale for undertaking this effort.

Moving into the more mundane updates to treatment . . .Let me start by announcing that I'll be having spinal tap number 9 of 12 today--3/4 of the way through those!


Second, part of the littany of questions I get at each shift change and when a doctor visits focuses on the numbness in my fingertips. The question is actually phrased: "Any numbness or tingling in your fingertips or toes?" I respond in the affirmative relative to my fingers. I am often asked to distinguish between whether my fingertips are numb or tingling but had only been able to decipher that I didn't have the same sensitivity that I once did and that buttoning shirts or handling little pills were becoming difficult activities.


Well, during this round of chemo the nurses started pricking my finger to monitor for rises in blood glucose as a reaction to some of the steroids I'm taking. I can now report that my fingertips are not numb as I do feel those finger pricks. I understand that my tingliness will slowly dissipate once the chemotherapy is done--very welcome news.


Finally, I've received word that my bone marrow biopsy has been analyzed but perhaps has not yet been reviewed. I'm still holding out hope that I'll have a chance to review those tomorrow and to digest their meaning with Dr. Connolly and Marla in attendance.

The progress continues to be good . . . ever onward.

Update

Good Morning All:

Not a tremendous amount to report today. I continue the process for round A3. I'm on the fourth floor here and not the typical 5th floor--consider it the 4th floor annexation of some extra 4th floor space. The room is officially in the 'female cancers' wing but 5 rooms have been blocked off for expanded hematology care and hematology nurses are assigned to the patient care down here on a rotating basis.

This is the second time I've been assigned a room on the 4th floor and I'm beginning to notice a slight disconnect between the doctors/nurses on this wing and my primary care team on the 5th floor. It is more common for the nurses to deliver changes in protocol down here which prompts my inquisitive my to ask what the cause of the change is. Nothing major so far, just disconcerting at times.

So far I believe that I'm on track for a Wednesday release . . .I'll keep everyone posted!

--Russ.

Update

Here I am at Hopkins.

I got here yesterday afternoon and in the evening they hung the first dose of chemo. My thinking is that they are looking for a Wednesday discharge and to be able to couple those events with my 'envelope' meeting with Dr. Connolly if my bone marrow biopsy results are available.

So, for now I'll content myself with being a good patient, keeping my informed eye on the treatment proceedings, watching the football games, etc. I'm on the floor where sleep comes a bit easier but meals come too early--4:00 for dinner?!

All-in-all, I feel great and continue to answer 'no' to the litany of questions that I get multiple times per day from Nurses at shift change and Doctors on rounds. These questions point out all the awful side effects from treatment that I might have but don't. There is no other way to feel about that than thankful. I'm also pleased that the treatment team feels that if I haven't experienced the worst of these yet that I won't be likely to going forward--I'd welcome that.

--Russ.

Today's the day

Good Morning All:

Looks like round 5 starts today. I'll update everyone when I'm actually admitted and wearing the ever-stylish hospital gown.

I had the bone marrow biopsy done yesterday--it was quick and uneventful though I'm a little sore today from it. While waiting for the supplies for the procedure, I had a chance to ask the Nurse Practitioner, Audra, her thoughts on me coaching Nolan's baseball team since I'm coming up on a critical point where I would need to let the parents of his teammates know whether I'm coaching or not. Audra believes that timing-wise it should work (something I'd worked out several times already) and that she wouldn't anticipate a major shift in my physical condition as a result of the future chemo treatments. Her input on one of the goals I set for myself meant a lot--seems like I might get there!

The results from yesterday's biopsy will be ready around the middle of next week. As those results are available I'll pass them along. Again, I've been told that everyone would reasonably anticipate that the marrow is following suit with the lymph nodes. I'd love to have that sort of good news with the marrow. The nice thing is that I'll be hit with a percentage of 'infection' with the biopsy results--an actual number that I can latch onto.

Thanks for continuing to check in, I'll write you from Hopkins next!

--Russ.