Steve in Chicago

It’s been a while and I apologize. It’s very difficult to visit and write even now; I suppose when you’re going through an ordeal we find our strength and bravery and ignore everything else. Now that I’m (somewhat) on the other side of this journey, I’m a bit weary of reliving any of it. This will most probably be my last posting and it’s a great note of conclusion that I can announce that it’s been over 110 days since my stem cell transplant and my recent scans are clear and I’m disease free. I do have some discomfort from the onset of Graft vs. Host Disease (GvHD) which is expected and represents the act of the new stronger immune system attacking my body. This is good due to the fact that the purpose of a transplant is two fold; first the extreme Chemo-Therapy kills off most everything, including the Lymphoma, the new stem cells from the transplant, upon seeing any residual Lymphoma, attack and destroys it as a foreign body.

So my friends… work and play, love and life, happiness and despair are all once again a part of my life in a more normal context.  There are a few more hurtles to jump and a few more peaks to scale, yet the future looks very bright and with your continued love, support, prayers, and good wishes, I step forward as you would have me do and continue on the path that I’ve chosen.I move toward the goals I’ve set for myself as well as the goals I’ve yet to set.

My love and thanks to all that have read, commented, or simply thought of me.

Steve

Seems as though the days and weeks are accelerating as they speed by faster and faster….this I believe is good. On Wednesday my home health care nurse came by at about 10:30, walked in said, I’m going to remove your line (the Pic line in my right arm that was surgically inserted about 3 months ago) and so I held my breath as instructed and she pulled the 18” tube out of my arm. Placed a band-aid on the hole, held pressure on it for a minute or two,  gave me a hug and said good luck as she walked out the door. Yet another milestone because at that moment I realized she wouldn’t be back and I was one more step removed from the need of stringent observation.

It seems to be going this way and the portion of my strength that I’d not acknowledged had left me, seems to be returning slowly but steadily. Yesterday I saw fit to ride a bike 13 or so miles again; albeit leisurely. Today perhaps the weight room and bike again.

The days don’t seem to lend themselves to as much work as they once did even a week or two earlier, perhaps the poor weather that has now left us for sunny days promoted a lack of motivation. Nevertheless, the thoughts of work, the studio, the band, all fill my head as my body and spirit begin to recover as a whole, from the process I’ve recently endured.

Although there’s a great deal that we don’t know, there’s a great deal of happiness abounding as we all experience the recovery without many problems. My numbers (blood work) seemed to drop a bit last week (drs. Say it’s normal), however some indicators regarding how my body is functioning and my overall health are unusually high and great. As always I cautiously await other issues that may arise, yet none thankfully, seem to make an appearance.

I apologize for having abandoned the blog a bit; I suspect my head’s been in a different place; however I’ll do my best to improve the frequency of my posts. Thanks for reading.

Steve

Wow, it’s been a while…very sorry. Been recuperating nicely in Chicago, seems as though all continues very well. Doctors say that, as it stands, I may return to LA at the end of the month. I’ll be handled by Dr. Schiller at UCLA upon my return. Not so sure about UCLA; great people but organizationally it’s a mess.
 

The labs today looked mostly normal and within the norms. My home nurse has the opinion that things are moving very well and quickly, I like that stuff. I’m hoping that my levels and labs stabilize; they’ll remove the pic line in my arm if so…this means easier showers and working out too. We’ll see there.
 

Feeling the sensation of hunger again both yesterday and today, great, and appetite is certainly increasing. Bike ride yesterday for 5 mi. today for 8 mi. Felt pretty good, but still a bit fatigued so slowly but surely.  
 

Guess that’s a pretty good update for now, see you all very soon.
 

sk

It’s about the numbers. I guess it’s sort of scary to admit, but at this stage of the game you concern yourself with numbers regarding how your Blood Counts are fairing and if  it’s working and how well. Well…We had very good news today, many of my counts doubled, to the point where they’re now within normal ranges, albeit at the low end, my immune system is now very close to normal, and I can begin to bike ride and work out to some extent. Wow.

So the family has named my stem cell donor; since you can get very little info prior to 1 year after transplant, we do know that she’s from Washington DC so we’ve named her “DC.”

So DC has apparently moved into her new home in my system and seems to be flourishing. Had a feeling that this might be the case, because I’ve not been as cold in the last 12-18 hours as I’d been previously.

Amazing….chat later

sk

I’m out and back at my family abode. Everything is going well. I have to allow myself to lay low and chill and it’s tough, but then the nurse will come by to draw blood and tell me that I look fantastic for just having this done, she was truly shocked.

It IS truly astounding. My counts are increasing as they’d hoped and it’s wild to watch this new immune system take hold and run my body; the new immune system is from a female…lovin’ her right now and forever.

Last night was a bit tough, night sweats pretty intense and up to the bathroom frequently, upside I drank about 2.5 liters of water and gateraid last night so that’s good. Food is a bit tougher because I’m not hungry but this too shall pass. Ok that’s it for now; Resting. Thanks again for keeping track of my life and I’ll write again soon..

 sk

Looks like I’m going home. All the Docs. concur and it’s today. Counts still climbing, feeling good, and looking forward to smelling fresh air again. It was one month yesterday that I checked into North Western Memorial Hospital, and now it’s time to go back to dad’s and continue the journey. Thanks to all for keeping me company through this leg of the trip, and now it’s onto the next trail.

The next post will be from abroad….

sk

So my white blood cell count remained at 0.6 until this morning; it rose to 0.8 which is great on a number of levels. First the Docs. thought I’d been fighting of a Sinus infection of some sort and the appearance of stable to upward trend of the white blood cells during the infection is very promising. It very likely means that my new immune system is working to fight as well as produce new cells. As much as I’d thought I’d be out on Sunday of this past week, I felt as though it’d be middle of this week. I’ll probably hit it, but we’ll see. 

Had a rough Saturday, but not super rough, just feeling odd, and  a fairly sleepless night. In retrospect I’d realized that the evening sleeping issue was mostly caused by lack of Pain Medication which is required for various reasons that are too numerous to itemize. With regard to Saturday, I think it was a ‘rewiring’ job on behalf of the new T-Cells. Think the new ‘guys’ were running around inside re-patching things and moving some things around. 

Allowing myself some resting time too, when at the computer or reading, if I’m a bit sleep, I’d muscle through it, now I allow the dozing….for now, but good sleep is a great thing… 

Hooked up a my space page too, mostly a bizz tool, but want to find out what the “kids” are up too.. thekingklongmusicgroup is the page… 

More soon 

sk 

When you’re undergoing some sort of prolonged procedure they often insert a long plastic tube in your arm that leads to the area above your heart. Because of the type of chemicals they’d been using I needed two lines, one in each arm. They removed one of the two lines about 5 mins. ago. Nice to get it out, and it was starting to get a bit sore and funky after 3 weeks in. So that’s good. 

I lost a point last night, from 0.7 to 0.6 on the white blood cells but other indicators got better so it’s a bit of a “positive” wash. There’s still a chance that I’ll get out tomorrow, but I think it’ll be a day or two more. Never know until it happens. 

Feeling good, and seems surreal to be leaving; I’d just put myself in gear and moved forward and now it’s time to get off the ship and move to the next challenge….Odd. I suspect we all felt I’d get my ass kicked very very hard from this procedure, yet it’s been tolerable. The next chapter is staying healthy, watching for Graft vs. Host Disease and then allowing the new immune system to kick the lymphoma out of my system. 

Lot’s of realizations this past 48 hours. About who I am, who I thought I am, and what that means….trust me it’s all good. Mostly ideas about who I’ve always wanted to be and what I thought I’ve needed to be that person, come to find out I have the skills and such of the person I’ve wanted to be and I am that guy. I just never really looked or avoided looking. Very empowering and powerful, and these thoughts will allow me to get on with my life as I’ve always hoped with the direction and confidence that I’d not thought I’d owned, but in fact do. 

That’s saying a great deal, and it all just came out and made sense as it formed while talking to a friend yesterday. 

Well, let’s hope it’s out of here tomorrow, but if not, a day or two more. 

 Thanks for reading, 

sk 

Good Day, 

We’ve seen a bit more of an improvement regarding my While Blood Cell counts; it’s up from 0.5 to 0.7. There needs to be some more growth prior to release, however it’s on the move in the right direction so the Docs are discussing discharging me on Sunday. 

The concept is so mind-blowing that I’m not sure what to do….Obviously I’m ecstatic, thrilled, and pleased that I’m getting through the first part of this without getting completely clobbered. The next part is a bit scary as they don’t really have a great idea as to what the experience will be for me. Yet, they do have a pretty good idea on the big picture and how to deal with things; we’ll have to see how my system responds to it all. 

I’m going to relax for a bit, and then hope to write more. 

SK 

Sorry Sorry Sorry, been feeling a bit lower than usual. The throat got a bit thrashed as a result of the Mucusitis; been hard to talk and swallow. Hate to complain, many have it much tougher than I.

There’s news and it appears to be good; after 10 days, my white cell count is on the rise. This may mean many things, the best of which is that the Graft is taking hold and the new immune system is beginning to graft to my system. There’s a great deal more that must be addressed, and we’ll have more specific information tomorrow, but for now it looks good. Dr. Gordon specified that today would be the day to expect to begin to see some changes in this manner; nailed it…so far so good.

More later

sk