Turning On A dime

It's been two weeks since my last post and as the headline indicates things can change fast and they did. About a minute after I posted the last entry things began to change. While it was a short period, about 2-weeks, my last CT scan showed a very small leasion on my lung. It was very undefined and very small, but my team felt like they should biopsy it to confirm their suspicion that it was a small fungal growth. Fungus is a common side effect of transplant, so while they don't like to see it, it's also not unexpected. So, between the proceedure and a mit-full of new medications, I had a harder couple of weeks than the previous ones. 

However, I'm back to where I was when I made the last entry on April 8th. I feel better each day and have been able to be outside to enjoy this latest touch of spring. To tell the truth, the weather is as potent a healer as my medications after a winter like we've had. My last clinic on Monday had my oncology team smiling as my blood numbers are still improving to "normal" and I'm disease free, which is huge given the tenacity of my particular style of cancer. For that, I'm gratful and thankful and that gives me the kind of energy and renewed courage to deal with these day-to-day stumbles that are simply part of healing.

So, two weeks has taken me through the gamit of emotions and physical change only to deliver me back to the spot I stood before- that's the path of healing and that's good and I'm fine, renewed and looking forward to a healthier tomorrow.

Thank you all for the continued support and love- there is no substitute to these healing powers.

Arnie    

Grinding It Out II

I just re-read my last post and found it quite accurate to my mood and condition at the time. While many of the nagging abrasions that dominated the entry are still with me, I've regained some of the long view required to do this thing with at least some grace. While I hated my last entry personally it was also cathartic in many ways. I believe I simply needed to whine.

My recent visit to clinic was yesterday and I realized that just 3-weeks ago I couldn't get around to my tests without a wheelchair and someone to drive me to UCH. A day at clinic would exhaust me to the point that I'd sleep on the way home and climb into bed when I did get home. Now, I'm driving myself, walking to my tests and reading as I wait to be seen by my team, a huge change in just 3-weeks. The nurses and administrators who see me each week all comment on how good I look and how well I seem to be doing. That's how fast things change.

Here's an update from the medical front. I have a full blood panel done each week because this disease is all about my blood and the creep toward normal ranges across the spectrum of tests. This week my number were outstandingly boring which brought a huge smile to the my oncology team. Given my limited understanding of the 45 lines of blood analysis, I'll take their enthusiastic response to mean an improving and more stable situation.

So, what should one take from this? My sister's platelets are engrafted and doing their job remaking my blood system. The problems that I have are treatable and expected. While I'm far from 100%, I'm feeling great and getting stronger as the days grind on. I'm looking forward to a spring and summer of healing and increasing activity and I am forever grateful for your love, concern and unflagging support, it makes a huge difference every day. 

Thank you all,

Arnie 

   

Grinding It Out

This post is, most likely, going to lack the long-view required to stay above the day to day of this disease and my stumble towards recovery. I think that the combination of a stultifying winter and a humbling set of physical challenges have exacted their toll on me in the last few weeks. I find myself struggling to hold up the blessings that have propelled me through the first third of this journey.

Sometimes it's simply too exhausting to stay above the day to day grind of coping with the medication, trips to the clinic, endless testing, a body that seems to decompose in some way every day and the shear volume of stuff (physical and medical) you have to track. All this would be challenging for a well person. Quite frankly, for someone like me I'm uncomfortable being so self focused for so long. However, taking my eye off that ball put me back in the hospital this month - so there is no percentage in letting up monitoring or ignoring ones physical changes. 

While this month hasn't been the most dangerous I've had since last September, I believe it's been the most challenging emotionally, punctuated with nagging physical ailments that makes me feel I'm regressing not progressing. It began when I got dehydrated from both a conflict in my medications and personal difficulty keeping my fluid intake at a proper level. The deeper I got into a cycle of dehydration, the less aware I became of my condition. I was simply "off " in my thinking, memory and energy as the poison levels rose in my body. Once admitted to the hospital they hydrated me 24-hours a day for 5-days to get my biochemistry in line. 

While there they did all the invasive testing possible to determine if I was disease free or that my condition was caused by some return of the dendritic cell tumor. The great news is that I'm completely disease free and that's what I should be focusing on as a measure of how I'm doing. This last week has seen my blood work get back in line and the further engraftment of my sister's marrow. All of this make the oncology team smile- and I get the impression that they were cautiously optimistic going into this and the results are beyond their expectations. 

So, while I'm not feeling very good and battling several physical conditions that are part of the healing process, I am disease free on day 105 from my transplant. And that's really the point of all this isn't it.

Sorry for the long delay in getting this out. Hope this finds all well and looking forward to a spring that is struggling to emerge.

Arnie         

Run, Rhonda, Run

This is not about me -- it's about us. Those of us in the Leukemia/Lymphoma club.

My friend Rhonda's been clear of her AML Leukemia for over 60 months, and consequently she's made it her mission to serve others with Leukemia by raising money for The Leukemia and Lymphoma Society. For Rhonda, I believe she's chosen the only challenge with enough challenge in it for her substantial will. Rhonda raises money by asking for pledges from friends, colleagues, and family and entering and running marathons. This spring she's running two. Rhonda also speaks about stem cell transplant to groups and physicians around the country and in general has become the poster girl for cord-blood transplant.

Quite simply, the trajectory of Rhonda's life has been altered in ways she never would have imagined by her battle with AML Leukemia. A battle which began on December 28, 2001. Rhonda's passage, enduring the rigors of chemotherapy and her decision to undergo the 38th double cord-blood transplant ever performed on an adult in the U.S., thrust her into the stratosphere of the treatment of diseases like we have. Decisions like this, to take your life to the limits of its tolerance, to the very limits of what defines life itself, are actually about that point when your body and mind are taken over by will. It's an unconscious, primal decision, not a pragmatic one. I believe survival is primal and choosing, as Rhonda did, to try an unknown and new treatment is as primal as decisions get. It's an emergence of a will we didn't even know we had.

Ultimately, its seen as bravery by the outside world: our will to be, to continue to live, to try anything, to set aside the pain you know is waiting, to suspend belief and just do; to show up every day and deal with what is dealt from the disease, from our attitude, from the twists and turns in our blood and the physical changes wrought by the disease and its unique treatment methodology.

But this passage, the emotional challenges, the unknown outcomes, the pain, the pure monotony and grinding boredom -- of, first, survival, and later, recovery -- are not about bravery. It's about uncharted will, the humanity we all possess but only tap in times of the extreme convergence of hope and statistical improbability. It is then we rise on the swelling tide of our will to be more than we ever imagined we could or would be.

So, why this story?

Rhonda is running for me this year. It is my honor that she's chosen me to inspire her to train, engage in and finish these most grueling of personal/physical/emotional challenges. But that's who she is: fearless, willful, challenging herself to limits she never imagined she had, much less, would have to surpass. Quite the opposite of me being her hero and inspiration in these challenges, she's been my hero for the last 5 years, long before I could imagine I'd ever need the kind of will that could be seen by her or others as courageous.

So please take a moment to peruse her website by clicking here. I'd love it if you would consider contributing towards Rhonda's goal of raising $6,000 for The Leukemia and Lymphoma Society.

Run, Rhonda, Run!

Arnie

Rise, Phoenix, Rise!

After a two-month-long hiatus from the world of third-person blogging, I'm making a brief return. With any luck, the once-mighty A Healthy Goodwin will rise from the dustbin of discarded blogs and experience a revival. I can't promise that I'll be posting regularly (not that I was ever all that good about posting in a consistent fashion), but I'll make sure the most essential news makes it to the blog.

Here's what's new: after a relatively solid January, Father Goodwin took a few steps backwards. He was struck by a steep decline in white blood cells, which came with a equally steep decline in energy. There were a few scary days when they weren't really sure what was going on. But just this week, a bone-marrow biopsy revealed no signs of the things they don’t want to see -- namely disease or damaged platelets. To explain the extreme drop in white blood cells -- he was hovering around 0.45 for a few days -- they first suspected CMV (cyto-meglo virus). Now, however, they're hypothesizing that this may all be due to tapering his steroids too quickly. They are in the process of trying to "jump start" his adrenal system. While they work on finding the right sized jumper cables, my dad reports "extreme fatigue" rivaling the "shitty-ness" associated with chemo. Hopefully, with the right combo of horse steroids and 20+ hours of daily sleep, he'll be back (and blogging) shortly.

In the meantime, the Boys Goodwin are experimenting with a new, innovative ways to get news out to ArnieWatchers. Because he lacks the energy to type -- and I don't always have the time -- we're going to give "audio-blogging" a shot. It's actually way less hi-tech than it sounds. But don't just take my word for it. Head to www.drop.io/GoodSpeak and check out our latest creation.

Good stuff,
Zach

Finding My Way Back

I need to begin this with an apology. 

While my absence could be justified, the guilt I feel over my lapse in communication is palpable and embarrassing, therefor stunting my actions. Of course, the longer I wait, the more my guilt becomes a burden. Well, it's time to move beyond that and risk being banal and shallow, engaging in reportage, data and prognosis. 

A warm-up if you will.   

After escaping the surreally bonds of UCH's 6NW on the 19th of December, I was re-admitted on the 21st for fever and other unspeakable bodily irregularities. However, it seemed to me that by the time I actually was assigned a bed, I was better, but it took two days to prove it to my Dr.'s. I've had some low periods in this passage, but none have reached the level of disappointment I felt on that Friday afternoon when my clinic Dr looked me in the eye and said he was re-admitting me. I was released very late on the following Monday- and went home and slept.

So, I arrived home on the 23rd, had my kids over on Christmas eve and sent them home by 9- PM,  with Erica feeling very sick. It turned out she was having an appendicitis attack, was admitted to St Francis very early on Christmas morning for surgery. I spent Christmas day at St Francis seeing her through the recovery room. She's fine and most likely forgotten the experience by now, but it simple put the cap on 2007's medical saga. There was some poetry in my New Years Eve post, because there seemed to be medical-dramas right up to the end of the year- and all I could really think about at the time was that all were safe for the moment.

Next we travel into January and the beginning of the real challenges brought to bare by this disease; doubt, fear, anger, intolerance, envy, acceptance, release, laughter, latitude, insight. There are more, but I'm sure you get the point. If my feelings and emotions were articulated as a map, it would detail the nooks and crannies of a varied and unstable landscape. I can't deny that it's been tough and I can't deny that I've risen beyond my doubts and fears a lot of the time, especially when I've been with friends. Of course, the down side of that strategy is that MJ gets to see and deal with the brunt of my darker moments which doesn't seem fare or honest.

Moving On To The Medical 

I'm doing wonderful, according to my Dr.'s, despite all the emotional/physical ups and downs, my blood work and the engraphment of my sisters platelets are progressing wonderfully. There's a gleeful tone in my Drs. voices as they review my blood work and bone marrow pathology. So, the news is good for this time in my recovery. My combination of emotional melt downs seems to be expected by them as well, just not me - I don't accept them very well.

So, there you have it, my month in review. I'll try and break this down more as I begin to come to terms with who I might be at the end of this-- the one thing is clear- I will be different- this changes a person in profound ways physically and emotionally. So, it becomes a challenge to accept the short comings and weaknesses being exploited by the disease and its treatment. I'm not there yet, I don't know where this ends and what physical attributes return to me after the long healing process is over. It's a lesson in patience and gratitude and acceptance and trust and finding ways to forgive yourself for the weaknesses in your humanity, for giving in to fear and seeing darkness not light. 

That's the struggle at this time. Thanks for being out there, I hope I'm  not too late.

Arnie

     

                                

December 31, 2007

At this hour all are dry, warm and safe. MJ and I will be forever grateful for your prayers, love and unwavering support. We toast you on this New Years eve.

Arnie and MJ