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.