We are hoping for the best (i.e. that Kel is now CURED), but planning for the worst (that he is not). And we know that if the surgery was not curative, that there is still the tandem transplant available, but the more I looked into it, with Kel's refractoriness (i.e. not responding) to cisplatin anymore, then the chances of the standard working are low. More than 0, less than we are comfortable with.
So, I had been told about a trial going on at MD Anderson that is using different drugs in their own version of a tandem. Actually, someone I met online through a great site for testicular cancer had told me about it a while ago since her husband went on the trial and is doing GREAT. I contacted the lead doc there and got a response back from him on a Sat night at almost midnight - an amazing doc! He is still running the trial and is having really encouraging results with over a 70% complete remission rate at 2 years (As a comparison, we are looking at less than 30% with the standard regimen), and should he need it Kel will be (likely, after a consultation and workup, of course) eligible and able to go on the trial! Not only will he be helping make headway for future patients, but it has GREAT odds too!
So we have a whole new reason to be positive today. This is the best he and I have felt about it all in a long time. Woohooo science (and scientists, if I do say so myself)!
Just a short note tonight - David and I are doing well. Spent a lot of time outside this weekend enjoying the great weather here in Oxford. Missing Kel, but we will see him in 2 weeks. Everything else is chugging along. I even put in my first grant from here in MS (to the American Cancer Society)! Fingers crossed ... for the next 6 months until I hear about it. The next one I am looking at submitting isn't until July, but I should hopefully find something else to apply for in between.
Obviously going to be positive tonight and say that NEW HOPE doesn't suck. Doc's who are so dedicated (and I don't think it was just professional courtesy) that they respond to emails on a Sat night don't suck ... in fact, I think they are amazing (Dr. Einhorn did the same type of thing). Feeling ok to think long term again DOESN'T suck.
One thing that does ... this darned cold and cough David and I have. That sux. :)
With love and hope,
T
Sunday, October 16, 2011
Friday, October 7, 2011
Remission*
Tonight's about remission with an asterick - the kind that is not quite there, but not quite not ... The kind that reminds me of Roger Maris's Home Run record - he had the record, but with 'special conditions'.
Kel had his 3 month post-RPLND blood work draw on Tuesday and we got the results today. Amazingly this far (4 months now?) after chemo, he is still anemic. AFP is that all important marker, with the 'normal' range defined by our local lab as <7.5 (US guidelines vary, but are consistent in being <10). Kel's last draw was 9.7, although we were hoping for something more like 5 or 6 ... today's # was 9.97.
So, no real change, not up, not down, but still borderline on the 'normal'. Our local onc follows the <7.5 for normal, although the world's expert told me that he considers anything less than 25 normal (by that rationale, Kel would have been considered in remission right after he finished his first set of chemo and his # was 22, and we know that was not true ...).
We are still in the holding pattern, still not clear as to what this means long term. Steady is good, still in 'kind of' remission is good, holding pattern SUX.
Kel's comment today was that he would rather be clear - #'s go down is good, #'s go up is bad but you know what to do ... this #'s being constant but kind of high and don't know what is going on? Well, UGH.
We (mainly he) should be happier than we (he) are (is), but it is good that there is no real change. Local onc would have liked to see lower #s so he has scheduled a CT scan for next week to map, just in case, with CT scan results on 10/21. Assuming all is good, the next b/w should be early November. I probably can't come back to Tucson for that, but seeing how stressed he (we) was (were) leading up to this and right after the appt? I can't imagine getting results without someone there.
My father asked me if longer with normal (or steady) #s is good, but that is a hard one to answer. It is because it is at least a vacation from all things cancer (but somehow it is still almost all we think about.) It doesn't mean anything long term, because if some cancer cells did escape the surgery (for which there is a ~50% chance), then depending on how small or few those escapees are, it just takes time for them to rear their ugly little heads. I think the average time to needing more therapy post RPLND is 6-8 months. When we hit a year with steady #s, then he can breath more, and 5 years out will be even better.
So, we should be happier than we are, and not feeling like we can enjoy this minor triumph SUX. (btw, I am onto the sux section) Steady is good, no increase is good, feeling like the floor will disappear under you any second? SUX.
But, I promised to try and be more positive, so:
-taking a trip back to Tucson to see Kel, see my Dad, see friends at UA does NOT suck. Wish I could spend more time and see more people, but it is only through the weekend.
-David getting to see his Daddy again is GREAT! Whole new playtime and not just with boring old mommy anymore. :) He will also get to see his great friends Ethan and Mollie (on whom I am pretty sure he has a crush) and Doyoon (and Allie) tomorrow. He has been so excited these past few days that he can't even nap, but his excitement DOES NOT SUCK.
-My Dad's baking does NOT suck ... well, except for what it does to the waistline.
and lastly,
-Friends and families enthusiasm and thrill at steady numbers and remission, even if it does come with an asterick, does NOT suck.
Off to get some rest, g'night world.
T
Kel had his 3 month post-RPLND blood work draw on Tuesday and we got the results today. Amazingly this far (4 months now?) after chemo, he is still anemic. AFP is that all important marker, with the 'normal' range defined by our local lab as <7.5 (US guidelines vary, but are consistent in being <10). Kel's last draw was 9.7, although we were hoping for something more like 5 or 6 ... today's # was 9.97.
So, no real change, not up, not down, but still borderline on the 'normal'. Our local onc follows the <7.5 for normal, although the world's expert told me that he considers anything less than 25 normal (by that rationale, Kel would have been considered in remission right after he finished his first set of chemo and his # was 22, and we know that was not true ...).
We are still in the holding pattern, still not clear as to what this means long term. Steady is good, still in 'kind of' remission is good, holding pattern SUX.
Kel's comment today was that he would rather be clear - #'s go down is good, #'s go up is bad but you know what to do ... this #'s being constant but kind of high and don't know what is going on? Well, UGH.
We (mainly he) should be happier than we (he) are (is), but it is good that there is no real change. Local onc would have liked to see lower #s so he has scheduled a CT scan for next week to map, just in case, with CT scan results on 10/21. Assuming all is good, the next b/w should be early November. I probably can't come back to Tucson for that, but seeing how stressed he (we) was (were) leading up to this and right after the appt? I can't imagine getting results without someone there.
My father asked me if longer with normal (or steady) #s is good, but that is a hard one to answer. It is because it is at least a vacation from all things cancer (but somehow it is still almost all we think about.) It doesn't mean anything long term, because if some cancer cells did escape the surgery (for which there is a ~50% chance), then depending on how small or few those escapees are, it just takes time for them to rear their ugly little heads. I think the average time to needing more therapy post RPLND is 6-8 months. When we hit a year with steady #s, then he can breath more, and 5 years out will be even better.
So, we should be happier than we are, and not feeling like we can enjoy this minor triumph SUX. (btw, I am onto the sux section) Steady is good, no increase is good, feeling like the floor will disappear under you any second? SUX.
But, I promised to try and be more positive, so:
-taking a trip back to Tucson to see Kel, see my Dad, see friends at UA does NOT suck. Wish I could spend more time and see more people, but it is only through the weekend.
-David getting to see his Daddy again is GREAT! Whole new playtime and not just with boring old mommy anymore. :) He will also get to see his great friends Ethan and Mollie (on whom I am pretty sure he has a crush) and Doyoon (and Allie) tomorrow. He has been so excited these past few days that he can't even nap, but his excitement DOES NOT SUCK.
-My Dad's baking does NOT suck ... well, except for what it does to the waistline.
and lastly,
-Friends and families enthusiasm and thrill at steady numbers and remission, even if it does come with an asterick, does NOT suck.
Off to get some rest, g'night world.
T
Tuesday, September 20, 2011
Not much brewing
I know I said I would try to write once a week, but for some reason I have been avoiding it. I guess it is because I simultaneously have nothing to say and a lot to think about. I must have a lot to think about - I can't fall asleep at night lately. My mind won't stop, and it isn't (all) cancer-stuff, most is just random nonsense.
This is what happens when I don't really have tv, apparently. That and a LOT of painting my nails different and crazy colors/patterns. :) Have to entertain myself somehow, right?
New work is going well - slow going to set up a lab and actually fill it with stuff, but it is moving along. I am organizing an 'elective' to offer pharmacy students, and I am trying to put together a 'Oncology 101 - Fundamentals of Cancer Biology'. Before they can understand the meds, they have to understand the disease ... well, as well as any of us can understand it. I won't teach it until next academic year (if it even fills with students), but I look forward to educating.
I am also setting up the second incarnation of my mother's memorial effort, this time at Ole Miss, and renaming it the 'Cancer Really Sux Memorial fund' - well, that is if they allow the word 'sux' in something like this. :) If I ever manage to make any profit on the shirts/mugs/etc, this is where the money will be donated. I need to figure out how to market those ... suggestions welcome! I am a scientist, not savvy in business models.
For cancer sucking - not much is going on with Kel, which is actually really difficult to deal with (for us all). Physically, he is fine, and even back to full duty.
But there is a sense of dread with the wait and see approach, especially with (at best) 50/50 odds of cure/recurrence. We both know we should be grabbing hold of the remission and holding on with all our might, but in this case trying to put on blinders to the possibilities isn't prudent. And the waiting feels like if a few cells have escaped, this is just giving them time to grow and take hold again. Heck - I think Kel wants to do the tandem transplant thing 'just to be sure'. Wouldn't happen - WAY to dangerous to try for that reason, but the sitting and doing nothing is hard.
David and I (and Dad) will be back in Tucson for Kel's next bloodwork results in 2.5 weeks, and then it will be wait another month, then another month, etc. So this anxiety will slowly increase over the next 2 weeks, then abate (we assume/hope/pray), then rise - repeat (hopefully) ad nauseum.
At least it is a good excuse to travel to Kel, right?
On the Mississippi homefront, all is calm - David is doing very well in his new school and learning his letters really well. I think he is aching to learn to read, because he is always asking me what something says and telling me the letters and asking me what the word is. So, we are trying to work on sounding things out - not sure if that is the right way to teach him, but we are making progress, I think. The ticks are back (they abated for a bit) with the weather getting warmer, but I gave Saja an anti-tick bath last night, so hopefully that should help. I got a rake to clean up the leaves in the yard too, since I am sure they are contributing to the problem.
Hmmmm, I said I would be positive, right? I have been reading old posts and old facebook entries and I really have focused on the Sux more than the doesn't suck ...
Thinking
Thinking
Well, being apart SUX, waiting for cancer to rear its ugly head SUX, the emotional toll this is still managing to take SUX.
Tomorrow is 12 weeks post-RPLND surgery and Kel is recovering well - that DOESN'T suck. Him being back on full duty and getting to be a cop again DOESN'T suck, me getting to develop a course to educate others about cancer DOESN'T suck ... Oh, David being really, really awesome in his new school and getting settled here DOESN'T suck, and having friends and family that almost 9 months later still put up with my whiny posts and care how we are doing DOESN'T suck.
There. That list is a little more positive than not, right?
It is getting close to midnight, and I need to get more than last night's 5 hours, so shutting down the computer now - good night!
T
This is what happens when I don't really have tv, apparently. That and a LOT of painting my nails different and crazy colors/patterns. :) Have to entertain myself somehow, right?
New work is going well - slow going to set up a lab and actually fill it with stuff, but it is moving along. I am organizing an 'elective' to offer pharmacy students, and I am trying to put together a 'Oncology 101 - Fundamentals of Cancer Biology'. Before they can understand the meds, they have to understand the disease ... well, as well as any of us can understand it. I won't teach it until next academic year (if it even fills with students), but I look forward to educating.
I am also setting up the second incarnation of my mother's memorial effort, this time at Ole Miss, and renaming it the 'Cancer Really Sux Memorial fund' - well, that is if they allow the word 'sux' in something like this. :) If I ever manage to make any profit on the shirts/mugs/etc, this is where the money will be donated. I need to figure out how to market those ... suggestions welcome! I am a scientist, not savvy in business models.
For cancer sucking - not much is going on with Kel, which is actually really difficult to deal with (for us all). Physically, he is fine, and even back to full duty.
But there is a sense of dread with the wait and see approach, especially with (at best) 50/50 odds of cure/recurrence. We both know we should be grabbing hold of the remission and holding on with all our might, but in this case trying to put on blinders to the possibilities isn't prudent. And the waiting feels like if a few cells have escaped, this is just giving them time to grow and take hold again. Heck - I think Kel wants to do the tandem transplant thing 'just to be sure'. Wouldn't happen - WAY to dangerous to try for that reason, but the sitting and doing nothing is hard.
David and I (and Dad) will be back in Tucson for Kel's next bloodwork results in 2.5 weeks, and then it will be wait another month, then another month, etc. So this anxiety will slowly increase over the next 2 weeks, then abate (we assume/hope/pray), then rise - repeat (hopefully) ad nauseum.
At least it is a good excuse to travel to Kel, right?
On the Mississippi homefront, all is calm - David is doing very well in his new school and learning his letters really well. I think he is aching to learn to read, because he is always asking me what something says and telling me the letters and asking me what the word is. So, we are trying to work on sounding things out - not sure if that is the right way to teach him, but we are making progress, I think. The ticks are back (they abated for a bit) with the weather getting warmer, but I gave Saja an anti-tick bath last night, so hopefully that should help. I got a rake to clean up the leaves in the yard too, since I am sure they are contributing to the problem.
Hmmmm, I said I would be positive, right? I have been reading old posts and old facebook entries and I really have focused on the Sux more than the doesn't suck ...
Thinking
Thinking
Well, being apart SUX, waiting for cancer to rear its ugly head SUX, the emotional toll this is still managing to take SUX.
Tomorrow is 12 weeks post-RPLND surgery and Kel is recovering well - that DOESN'T suck. Him being back on full duty and getting to be a cop again DOESN'T suck, me getting to develop a course to educate others about cancer DOESN'T suck ... Oh, David being really, really awesome in his new school and getting settled here DOESN'T suck, and having friends and family that almost 9 months later still put up with my whiny posts and care how we are doing DOESN'T suck.
There. That list is a little more positive than not, right?
It is getting close to midnight, and I need to get more than last night's 5 hours, so shutting down the computer now - good night!
T
Monday, September 12, 2011
Come and gone
Kel that is - he came to visit us here in Oxford, but was only here for <48 hr. He arrived Sat late afternoon and I took him to fly out of Memphis today ~1. Great trip, but WAY to short.
On the upside, it was GREAT for David and Saja, and even old, deaf, Hudson, to see Daddy again (and me too, of course). We were only apart for 2.5 weeks, but it felt like forever.
We got a bit of unpacking done this weekend (I had stalled), rearranged some of the rooms and made the new place feel more like 'home'. Mostly, it was just good to spend time with Kel again.
Our anniversary dinner ended up getting rescheduled to Sunday night at the 'Ravine' which is a tucked away place a few miles from the square. I was taken there during my interview trip, and it was a great place to go back with Kel. Our anniversary tradition is to try a new restaurant every year, so this was a good first one for Oxford. Dinner was great, we had a wonderful new babysitter take care of David and enjoyed a special dinner.
It, of course, has been an eventful year and we talked about it all, laughed a lot, cried a bit, and reminisced mainly about our 10th year of marriage, but also talked about the future, both short and long term.
It is a good thing that we talk about the long term - even mundane stuff like redoing the kitchen in the new place - because we are squashing the fear we both have about the long term being questionable.
Truth is we have no idea. This is a weird place to be in with the whole cancer journey - celebrating the (almost) remission, waiting for the other shoe to drop, and a whole hell of a lot of not knowing anything, really.
Is it done? Is there more? How likely is the cure still? What are the options? What can we be doing? Neither of us are good at waiting, or sitting back and doing nothing. Come on, time to do something more! Kel even said (not last night, a while ago), that he wants to do the high dose chemo just to be sure and get it all. Do it now. Not gonna happen, but I get it.
Nothing else to report - back to me and the dogs in this quiet night. Kel called a little while ago, he is back in Tucson and will be back to work tomorrow. We miss him. Being apart sux, but having a nice weekend together falls in the 'Does not suck' category.
I have spent a lot of time tonight reading through posts over the last year, and I decided I need more 'does not suck', so that is my goal. I don't know how often I will post, since we are in hiatus mode, but I will try for at least once a week and will aim for more positive than negative. Aim ....
With love,
Tracy
On the upside, it was GREAT for David and Saja, and even old, deaf, Hudson, to see Daddy again (and me too, of course). We were only apart for 2.5 weeks, but it felt like forever.
We got a bit of unpacking done this weekend (I had stalled), rearranged some of the rooms and made the new place feel more like 'home'. Mostly, it was just good to spend time with Kel again.
Our anniversary dinner ended up getting rescheduled to Sunday night at the 'Ravine' which is a tucked away place a few miles from the square. I was taken there during my interview trip, and it was a great place to go back with Kel. Our anniversary tradition is to try a new restaurant every year, so this was a good first one for Oxford. Dinner was great, we had a wonderful new babysitter take care of David and enjoyed a special dinner.
It, of course, has been an eventful year and we talked about it all, laughed a lot, cried a bit, and reminisced mainly about our 10th year of marriage, but also talked about the future, both short and long term.
It is a good thing that we talk about the long term - even mundane stuff like redoing the kitchen in the new place - because we are squashing the fear we both have about the long term being questionable.
Truth is we have no idea. This is a weird place to be in with the whole cancer journey - celebrating the (almost) remission, waiting for the other shoe to drop, and a whole hell of a lot of not knowing anything, really.
Is it done? Is there more? How likely is the cure still? What are the options? What can we be doing? Neither of us are good at waiting, or sitting back and doing nothing. Come on, time to do something more! Kel even said (not last night, a while ago), that he wants to do the high dose chemo just to be sure and get it all. Do it now. Not gonna happen, but I get it.
Nothing else to report - back to me and the dogs in this quiet night. Kel called a little while ago, he is back in Tucson and will be back to work tomorrow. We miss him. Being apart sux, but having a nice weekend together falls in the 'Does not suck' category.
I have spent a lot of time tonight reading through posts over the last year, and I decided I need more 'does not suck', so that is my goal. I don't know how often I will post, since we are in hiatus mode, but I will try for at least once a week and will aim for more positive than negative. Aim ....
With love,
Tracy
Wednesday, September 7, 2011
Dare we dream to call it ... remission?
Kel got the results from his bloodwork today and finally called me around 12:45 MS time after a grueling morning of nerves for me (and maybe for him too?) ...
The only number that really matters now is his AFP. At last check 4 weeks and 1 day ago (this is important, because the 1/2 life of the protein AFP, the time it takes for 1/2 of it to be cleared from the body is 5-7 days) is was 12.5 ug/L. This time the number was ...
Drum roll please ...
9.7, still marked with a little 'H' next to it on the results sheet for 'High' on the lab values, which this lab reports as normal being <7.51.
Down is GOOD. We have no way of knowing if it actually was lower and this is on the rise, if his normal is just higher than the average person's, etc. Only time and monthly monitoring will tell, but down is definitely GOOD. For now we breath a little better, sleep a little sounder and are relieved for 4 weeks until we go through this again. Although the next time I will be there.
On that note, this is the first appointment I have missed. And it sucked big time. I am a bad wife. :(
Given that I just started the new job in MS about a week ago it wasn't really feasible for David and I to go back yet, we will do that in October for the next appt, but still ... it sucked.
Speaking of David and MS, for those not on Facebook, this has been a rough transition for him and us in general. He is struggling without Daddy here and just Mommy (both halves - Daddy being in Tucson and Mommy being the only one he deals with. Apparently I am just not a good mom (sarcasm, don't worry)). The biggest trouble was at the school he started when we moved to town. They are a great school for learning, and when kids are used to the routine it goes well, but it was a BAD fit for David. After not quite 2 weeks I took him out and enrolled him in another pre-school. He has been at the new school for 3 school days and has done great, other than his teacher learning the limits of his 'dare-devil'ness today - of which there are no limits. No behavior problems, he is happy, all is good.
The other issue we have had with this transition is the wild-life here in MS. And I don't mean of the large variety - the deer that run through our yard are gorgeous. But what they carry with them is disturbing. I first found ticks on David, then on Saja and then all over the house as they fall off of their hosts. We have been fighting this 'plague' for about a week now, and I have bad dreams and wake up nightly about them and dreaming they are all over the bed. I only pulled one off Saja tonight and vacuumed one off of the couch - that is HUGE progress.
So, we are making progress with ticks, progress with David at (another) new school, progress with Kel's #s and my new job is going well! I even have my office just about setup - now onto stocking my lab (Fisher Science Rep should be there tomorrow to talk about a startup lab package and all of the items I need). Woohoo - go science! Time to get back to working on curing that pesky cancer, right?
Kel will be here this weekend, celebrating our 11 year wedding anniversary. I already have the babysitter set and the reservation made for City Grocery on Oxford Square. It should be a nice night, although I am vaguely worried how David will take to Kel coming into town and then not coming with us to dinner on the same day ... oh well, maybe he will be fine, right?
No 'Sux' section tonight, only what doesn't suck and that is being able to comfortably, even if the lab values are a slight bit high, call this cancer in REMISSION! That is my new favorite word. Aretha needs to write a new song 'R-E-M-I-S-S-I-O-N', screw 'RESPECT'. :)
Off to scratch my veritable plethora of mosquito bites now ... goodnight,
T
The only number that really matters now is his AFP. At last check 4 weeks and 1 day ago (this is important, because the 1/2 life of the protein AFP, the time it takes for 1/2 of it to be cleared from the body is 5-7 days) is was 12.5 ug/L. This time the number was ...
Drum roll please ...
9.7, still marked with a little 'H' next to it on the results sheet for 'High' on the lab values, which this lab reports as normal being <7.51.
Down is GOOD. We have no way of knowing if it actually was lower and this is on the rise, if his normal is just higher than the average person's, etc. Only time and monthly monitoring will tell, but down is definitely GOOD. For now we breath a little better, sleep a little sounder and are relieved for 4 weeks until we go through this again. Although the next time I will be there.
On that note, this is the first appointment I have missed. And it sucked big time. I am a bad wife. :(
Given that I just started the new job in MS about a week ago it wasn't really feasible for David and I to go back yet, we will do that in October for the next appt, but still ... it sucked.
Speaking of David and MS, for those not on Facebook, this has been a rough transition for him and us in general. He is struggling without Daddy here and just Mommy (both halves - Daddy being in Tucson and Mommy being the only one he deals with. Apparently I am just not a good mom (sarcasm, don't worry)). The biggest trouble was at the school he started when we moved to town. They are a great school for learning, and when kids are used to the routine it goes well, but it was a BAD fit for David. After not quite 2 weeks I took him out and enrolled him in another pre-school. He has been at the new school for 3 school days and has done great, other than his teacher learning the limits of his 'dare-devil'ness today - of which there are no limits. No behavior problems, he is happy, all is good.
The other issue we have had with this transition is the wild-life here in MS. And I don't mean of the large variety - the deer that run through our yard are gorgeous. But what they carry with them is disturbing. I first found ticks on David, then on Saja and then all over the house as they fall off of their hosts. We have been fighting this 'plague' for about a week now, and I have bad dreams and wake up nightly about them and dreaming they are all over the bed. I only pulled one off Saja tonight and vacuumed one off of the couch - that is HUGE progress.
So, we are making progress with ticks, progress with David at (another) new school, progress with Kel's #s and my new job is going well! I even have my office just about setup - now onto stocking my lab (Fisher Science Rep should be there tomorrow to talk about a startup lab package and all of the items I need). Woohoo - go science! Time to get back to working on curing that pesky cancer, right?
Kel will be here this weekend, celebrating our 11 year wedding anniversary. I already have the babysitter set and the reservation made for City Grocery on Oxford Square. It should be a nice night, although I am vaguely worried how David will take to Kel coming into town and then not coming with us to dinner on the same day ... oh well, maybe he will be fine, right?
No 'Sux' section tonight, only what doesn't suck and that is being able to comfortably, even if the lab values are a slight bit high, call this cancer in REMISSION! That is my new favorite word. Aretha needs to write a new song 'R-E-M-I-S-S-I-O-N', screw 'RESPECT'. :)
Off to scratch my veritable plethora of mosquito bites now ... goodnight,
T
Saturday, August 27, 2011
Almost 3 weeks ...
Sorry it has been so long, not much to report on the Kel front, since we are just waiting for more bloodwork.
But for those who don't know, in those 3 weeks we packed up the house and moved across country to Oxford, Mississippi where I have a new job as an Assistant Professor at Ole Miss (you know, like in the movie 'Blindside'). I officially start the new job on Thursday 9/1. We got here just fine and are settling into a new routine, new home, new school.
Kel drove out here with David, the dogs, and I, and stayed for a few days before returning to Tucson. He does not have a job here yet, and hasn't really beed applying because 1) he has been too ill and 2) leaving TPD is going to be hard.
He went back to a mostly empty place on Wednesday, well, actually after a bear of a trip home he got there on Thursday night. In 2 weeks Kel will come back to Oxford for our 11 year anniversary (for those who were there at the wedding, yes, it actually was 11 years ago!) and a quick visit before returning to Tucson.
I wanted to name the post 'Trial Separation', in the literal sense that we are apart, but Kel wasn't a fan of that. It is hard being apart with the kid, after the last 8-9 months, just in general. I keep complaining about unpacking, or David being a handful, and it must be hard for Kel to hear that and not be able to do anything. I just have to learn to not complain about the little things.
Oxford is a MUCH smaller place than Tucson. There are basically 2 main streets, but I have yet to learn where everything is (just found food shopping today!) I am happy with smaller, LOVE the yard space in the new house (2 acres), and can't wait to start at Ole Miss. We just miss Kel.
On the cute side, David has started playing soccer here (great way to let him run out his energy) and his first game will be on Thursday. I am definitely going to videotape it. :)
I am exhausted from the moving and unpacking, so for tonight's SUX section, going to have to go with this time apart from Kel. We are both fiercely independent people and definitely able to survive on our own, but after all the downs and ups and more downs this year has brought, being apart is difficult. David and I miss Daddy.
From the deep south of Mississippi, good night.
T
Wednesday, August 10, 2011
Still not in 'Remission', but heading there
Kel has officially had 'cancer' for 224 days - diagnosed on 12/30/10, and continued through today. We were hoping to hear the all clear after his blood draw last week, but alas, it was not to be.
His AFP (that all important marker in his blood) has gone down, which is GREAT news, but only to 12.5. Remission officially occurs when the # is below 7.5. The protein has a half-life of ~1 week, so we expected it to be closer to 6 based on the last results, but as my dad pointed out (damn math expert that he is), the # 6 was assuming that Kel's AFP will get down to 0. That might not be true. His baseline may be at the higher end of normal at 5 or 7.
So fancy math ... if we assume that his 'normal' is 5, and his last draw had the AFP at 48.5, then 3 weeks later it should have been ~10. And that is just me picking 5 at random. It may be 7, or 2. We won't know until it gets there. So really, the progression of AFP is decreasing from before as it approaches normal, and remission is not yet official, but Kel is getting closer and closer every day.
Our oncologist referred to this time as 'nothing to worry about', but 'not yet in the clear' ... it is a holding pattern with cancer. A prolonged slow dance. Oh, joy.
I think knowing one way or the other would be better ... knowing he is in remission, at least for a while, or knowing that the tandem transplant is imminent. But the in between not knowing crap? That sux (sorry, doing the sux section early here).
I don't think I could figure out how many of these last 224 days have been spent waiting. Waiting for chemo, for results, for magical 'remission', for the elusive 'all clear', for surgery, for appointments. Waiting and worrying and not knowing and fearing (I know, that sentence needed commas). Oscillating between hope and faith, and pessimism and tears. Doing something 'active' helps - scheduling surgery, or doing chemo. It is the in between that is hard. This whole 'hurry up and wait' thing? SUX.
More fancy math now ... let's stick with my same assumption of a baseline of 5 for Kel's AFP. The next blood draw is in 4 weeks, and from 12.5 it should be down to 5.5-ish. The next blood draw appointment is 9/2 with results on 9/7. Let's GO remission! please?!
Thanks for all of your prayers, thoughts, hopes, and love. It helps us feel the love and keep hope high.
With love (and fatigue),
Tracy
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