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."