That's how many days I've been around since my Transplant eight years ago this morning at 12:30 am PDT. I figure at least 2,600 of those are past the day my AML would have forced my exit from Planet Earth. And I'm far, far away from wanting to bow out, gracefully or otherwise.
It's overwhelming to think about it and absolutely amazing.
So many people made it possible for me, not a king or anyone important as the world counts importance. I think that's beautiful how many of us "norms" are able to avail ourselves of such incredible magic and science.
I guess today, while I'm always so grateful to my donor, I'm thinking of all the people who went before me, giving up their lives on this strange and risky procedure which ultimately gave me life. We are truly standing on the shoulders of giants.
Thanks to all of you for giving me a place and a voice to process this wonder over these precious days.
I am new to this group as of today.
I have a diagnosis of NHL with involvement in bone marrow and spinal fluid. It is stage 4 and I have had 4 treatments out of 6 -R-CHOP. I have treatment of spinal fluid in addition and because so much in spinal fluid, my doctor is thinking of bone marrow transplant. I am scared! What would it be like?
What would it be like?
It is scary to think about and some folks have a really rough time with it. There's no telling how an individual will respond until they go through it.
But there are those 2,500 or so days I've been around that I most likely wouldn't have been without the transplant. That's what we all bet on.
Thanks to you and everyone for your comments and support.
I was interrupted when I was writing my post yesterday - those stupid people expect me to work when I'm at work.
Anyway, we're all fortunate to have your counsel on this site. I really appreciate your support when I relapsed last year. This site is definitely your calling.
What a milestone, what an inspiration. So much hope is given just by you making this post. For people like Nate and i, where he is 15 months out, and especially for people just beginning. You are living proof that there is hope and it can happen. You personally, Tex, have helpedme so, so many times. Advice, a joke when I needed one, and support when I was lost. Thank you for sharing your life with me, and with all of us.
Ditto to what everyone has already said here! Tex, there truly are no words to express how much we all appreciate the words of encouragement, wisdom, and humor that you share with each of us. You've definitely been there for me & Dean over the past few years more times than I can count. You're amazing and give us all hope for a better future. Luv ya my friend.....Betsy
Wow Tex congratulations! What a great day and as we who have seen you on this forum know in your "2'600 days" you have helped many others going through this terrible disease. I can remember being in the hospital reading yours and others posts and it giving me a sense of hope. Many thanks and again congrats!
My response to this thread is way overdue, but I also take great pleasure in bumping it back to the top of the list, because it's truly quite a milestone. Reading it the first time brought a huge smile to my face, and re-reading it today did the same.
I'm grateful for the docs and the technology that made it possible for you to be here, day after day, encouraging, commiserating, injecting a touch of humor into a situation sorely needing some levity, offering sage advice and counsel in your own distinct way.
Thanks for carrying on here with such reliability and dedication.
But it's great to hear from you. How's school going?
Actually, I like school a lot. I think I will like it even more now that I am done with math!!! I just started back for summer this week, after a short break (I finished up spring quarter on the 23rd). I had, and still have, a lot of things to keep me busy here on my little farm - a lot of what I like to call "remnants of winter" which means fence posts to replace! And seemingly endless mowing, trims to be painted, etc. etc. But I did ride my mare yesterday, for the first time in ages, and hope to be able to continue riding her this summer. She is very fun - a homebred, now 15 years old, and we know one another very well - it's a real hand-in-glove relationship.
The process of going to school is interesting at my age - a lot of the little bits and pieces of information I've accumulated over the years clunked into place this past quarter while I was taking microbiology, so that was very satisfying. I'm taking A & P this coming fall and winter, which actually has me a little freaked out because there is a tremendous amount of memorization involved. In fact, I just bought my book and am planning to spend some time this summer reading ahead in hopes of getting a jump on the quarter, and I saved these two classes until this point so I could get my study habits dialed in before I tackled them. So far everything's been going well, too bad about that non-existent social life!
I have no idea what A&P is. There used to be a supermarket chain with that name but I don't think they handed out grades.
I maybe knew once upon a time but I was a Poli Sci major with a minor in business (which meant I took the "fun" business courses). Hate getting old.
Now, about this social life business. Don't cougars prowl college campuses (campae?) these days? I'm sure you could rustle up a little something.
Sure wish you were prowling these pages on a regular basis. And what the hell ever happened to Pam? She was writing less because of her carpal tunnel but then vanished pretty much altogether. We need you guys.
I did date a guy for about six months who was 9 years my junior, but most of the guys on campus are more like 20+ years younger than I, which is quite a stretch, don't cha think?
I did try to be a bit more present here over the past six months, but precalculus and statistics were trying to take over my life. If can I get a bit more caught up around the farm, I'll try to give you a hand more often this summer. I wonder about Pam, too. Hope she's doing well.
I wouldn't have suggested that to a married woman. I was suggesting it to WBF. She's free, clear and there's no reason she shouldn't have a blast in the second half or so. Get those young guns and make them do chores around the house that we older guys couldn't do. And they don't need a pill to, um, perform.
HEY WILLOW! WE'RE TALKING ABOUT YOUR SEX LIFE HERE!
which means fence posts to replace!
Maybe you need one of those post docs that Warrior mentioned.
Hey! Write your own material!
Thanks for the info on Pam. I hope her hands are okay. Imagine, she did so well avoiding any notable GVH and then her wrists go kablooey.
Hope she's okay.
I am certain that you could find some unemployed post-doc to help with your fence......
maybe some unfunded PI (principle investigator) I just submitted (7/3/12) by NIH grant competitive grant renewal so may be if the NEI does not like my grant I will have some time on my hands
Hey, I just found this post, I forget to browse the board, especially when the spammers are at their peak, I tire of wading through 30 posts to try and find one credible, but then I feel guilty because someone might need help.
Congrats on your continued success, I for one am damned glad you hit the 2922 a while back, and am looking forward to reading your post in the future that doubles and triples that number. I would toast you with a bottle of good wine but it damn near kills me with the indigestion so I will raise my glass of iced tea in replacement, but the congratulations are just as sincere (The wine would taste better for a few minutes though).
Meatball and Mullet took me off the nexium, looking toward Cleveland for possible options.. But I am staying away from the alcohol, the liver numbers aren't horrid, but they are showing tissue damage because of the Sprycel. That I have to take, the alcohol was fun and enjoyable. So for now, I have a wine closet stocked full, and no one to enjoy. Bob hates wine. Maybe someday.
If it were not for the heartburn, I wouldn't worry so much about the liver, can't do more damage to it than I did in my early 20's through 30's. Damn indegestion about kills me after a few sips, and I have never really been one to sip. Looking for ways around it, but so far nothing has worked.
Well, liver damage can accumulate and it doesn't always do a great job of healing itself. Still, it's built to take a good bit of abuse.
Why did they take you off Nexium? You do need to be aware of when you take it so there's no messing with your calcium absorption. But you can just take it at a different time from eating...in fact you're supposed to anyway.
They took me off everything, even the cardizem for Printz Metals Angina. This is another reason why I am looking for new doc, Tuesday is the day. Almost everyone else on here takes nexium, others meds, I was taken off all of them, even the small dose of antidepressant, I am really thinking Cleveland will have a different approach to my treatment. My son has barred me from going outside, he said I look like I have pig eyes. LOL he can be so kind.
Had a heart attack when Nick was 3, I was 35. Stress related, so they say, no serious damage, was whisked off to West Penn via Life Flight, they did immediate heart cath and found no blockage. After three more days and a barrage of tests the insurance finally stopped paying for they decided I had angina. Been on heart meds ever since. Last fall with the CML diagnosis, the oncologist removed me from all meds, even the Cardizem. That will be another issue we talk about in Cleveland on Tuesday.
The Sprycel needs to be watched, for the PE, changing heartbeat, and a few other issues. I was and have been really good on the Cardizem for years, we will talk tomorrow about why I was taken off it, what interaction it can do, and if I can begin taking it again. I am not looking for a great revelation tomorrow, but I am betting the doctor actually shows up for the appointment and am hoping when I receive labs they are repeated correctly, instead of missing the mark by several one-hundreths, a big deal when it comes to the PCR.
Miss you guys too...but you know you can expect the unexpected drop in from me occasionally
Hamish is still here! I won't lie and say it isn't a struggle...it still is and he is still on lots [!] of meds. He looks pretty dreadful from time to time but this is mainly the GVHD ...still pretty much the same as it is has been since it started. Definitely not pretty but usually I forget because it just Ham to me...it's not till someone reminds me that I take a good look and then it kinda hits me. He is currently on a leprosy drug to try and tackle...they just keep trying to throw things at it. He looks like a burns victim.
But...with our usual bravado we stay positive! And it definitely does not stop him from getting out there and enjoying life. Recently I asked him if he had a "bucket list" ...kinda nonchalent...so as not to make a deal of it, but wanting to know so I could maybe help with getting a few ticked off...he doesn't have one, doesn't want one...happy to be where he is and be with his mates...how cool is that? We shoudl all try and just enjoy those little things and saturate ourselves with time spent with friends.
Glad to know you are doing great Tex and keeping those little pearls of wisdom coming for the folks here.
Sounds like Ham and I are cut of the same cloth. I refuse to have a bucket list...well, I do have one for self growth, I'd like to hit real maturity before I die but I just want to do what seems appealing at the moment instead of setting up a bunch of things I want to do.
Is the leprosy drug dapsone? I was on that and penicillin at one point to replace Bactrim as they thought it was suppressing my WBC too much. I think I heard it wound up not being overly effective for leprosy, how 'bout that? Anyway, that was to work to keep me from picking up a parasitic issue, near as I can tell. It wasn't for GVH.
I really admire your son and his mom. Ya'll continue to be real troopers.
Do stay in touch. Tell Ham hi for me.