Monday Again

What he came here to do last Monday night has been accomplished. The lung and bone marrow biopsies are completed. The intestinal thing is culturing. The top line diagnosis of the lung tissue is Graft vs Host Disease which they will treat starting today with 4x a day injected steroids. MRSA (stands for something like common antibiotic resistant staph, common to hospital workers and people who have a weakened immune system) also showed up in the earliest lab results. They'll start treatment of the GVHD here at the hospital, it can't be done at home because of its frequency of dosage. Though all the results aren't in, the pulmonologist doesn't want to wait. I believe testing for progress will be done with CT scan only, in addition to improved symptoms. But, he'll need to be here for, I could say several more days, but I don't even annoy them by asking anymore. How can they possibly know--but when the dose is reduced to fewer injections, and maybe oral prednisone, he'll go home. Soon, I predict, he'll be bored and irritable, a sure sign of improvement. For now, he's drifty and recovering once again from the anesthetic administered for this morning's bone marrow biopsy. More soon--it should be much better in a few days. MJ

Day 5 Friday the Fourth

Arnie had the lung biopsy procedure Wednesday. Recovered in ICU Thursday. Is on the 3rd floor now being monitored. Each day he looks better. Can't eat though. Looks like a coat hanger, but his color is good. I've got tons of plants on the rooftop deck to surround him when he gets home. Jake got him a deck chair that reclines, has a footrest and a sun roof. So, recovery at home will be to Arnie's liking. Hot, sunny, with lots of trains going here and there. Erica's coming to the hospital tonight and today we're watching movies and documentaries. At some point, they'll do the bone marrow biopsy and they're trying to decide how best to proceed to discover the source of the intestinal difficulties that have gone on so long. Thank you for the cards you've sent. It's such a pleasure to bring him those personal notes from loved ones. We're on hospital time now, and it's a holiday, so not a good time for being impatient for results, so we're trying to become bovine about our expectations and timetables. Drugs and movies help. Let's say, we'll know something in a week? Until then, assume he's resting round the clock and he really does look good. Having hair helps, but his color is great. Mary Joe

Arnie's goin' back in the big house for a week

Arnie’s packing up to go into the hospital for a one-week stay. They have not known the origin of the problem in the GI tract, and something mysterious, which may be Graft vs Host Disease appeared in the lungs during a CT scan this morning. Drs Godley (onc) and Mulane (immunologist) concurred that it’s time to get to the bottom of what’s causing his malaise, fatigue, lack of appetite that has been steadily increasing over the last three weeks. Three weeks ago, we were charting our course to see Zach in his triathlon, today, that seems ludicrous. While they have him sedated for the open lung biopsy, they’ll perform a bone marrow biopsy and within days, or perhaps tomorrow morning, do some GI scoping. What’s up with the lungs may be entirely different from what’s up in the gut. They’ve tried changing medications and waiting and seeing etc, I’m really relieved that this is taking place. I’m hopeful that when they know what to treat, they’ll no doubt know how to treat it. And this gradual decline has been disheartening to say the least. So, in a week, he’ll be better and moving in the right direction again. So, a week of biopalooza, and a whole new deal. More later, Mary Joe

Time Flies

Its been a little more than 2-weeks since my last post. I didn't realize It had been that long, but each day is much like the others in some form. The idea of being as free as I am to deal with my recovery is both a blessing and a interesting kind of curse. The blessings are obvious and truly make my recovery an experience that allows me the freedom to focus on healing, be at my various clinics when they'd like me there and not have to negotiate my time with an employer. In truth, I wouldn't know how to cope if I had many other masters to serve besides my illness. 

I've had a good run of healing in the last 2-weeks. The spot on my lung didn't show anything, either fungal or otherwise, but it looks to all, who make their living interpreting such things that it is consistent with fungal growth. Basically the sample was so small that it didn't grow anything period. I've seen a few specialists since and they are agreed to basically treat it as fungus and watch it.

My energy has been good and my blood work is "perfect" according to the lovely Dr. Lucy Godley, my oncologist. I have to say the team has been really great to go through this with, they have enthusiasm, compassion and a upbeat manner that gives me courage and a since of progress even when I'm feeling progress is too slow or simply like a dog, chasing its own tail, never winning, but never loosing either.

I believe that's it for the moment. Take heart that things are progressing, it's still a long time to normal, but I feel better each week. When I don't feel I'm making progress, I try to remember that in March I couldn't even get around to my clinic appointments without a wheelchair to get from station to station. Oddly enough the wheelchair was an improvement over the previous months, so everything is relative and context always informs where you really are.

Thanks always for keeping track and keeping in touch through this wonderful tool. I'll keep posting.

Arnie

    

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