Do we really have anything to give thanks about?

It is the time of year where we think back over the events of the last 12 months and give thanks. And I’ve been thinking about it a lot … do I really have anything for which I can be thankful?

A year ago we were unveiling my mother’s headstone, because cancer stole her in January of 2010 (I know, that is beyond the year, but the unveiling was the start). A month later came Kel’s diagnosis and soon we traveled down the road of chemo for 3.5 months, found out it didn’t fully work, tried salvage chemo, that didn’t work, had some salvage surgery and 5 months later (almost) have no idea if that worked. This summer I lost a friend to leukemia, and recently two more friends have heard that dreaded ‘C’ word. Man, cancer really follows me around, doesn’t it?

In the midst of all of that, where can I be thankful? Honestly, this cancer road sux (really sux), and finding the positives can be hard. But I am going to say I do have things about which I can be grateful, and maybe it is just because we’ve had a quiet 4.5 months since the last ‘treatment’ for Kel that I can think this way.

I am going to claim for my own, and hold onto, the positive, and I give thanks for (in completely random order):

-Back pain. Back pain so severe that Kel actually went to the doctor to get the t.c. diagnosis before it kept on going and spreading and we got onto treating it like the beast it is (killing it with poison)

-Miraculous, amazing, wonderful family and friends who supported us, let me/us vent, talked to us, cooked for us … really made a hard situation more bearable.

-Of those, my father deserves a special note of gratitude. He was barely out of the ‘all things cancer’ world when Kel was diagnosed (thank goodness Dad was actually in town with us those days – he helped so much with David), and he has been a rock for us. It can’t be easy for him to hear it all again, see it all again, live it all again, but he has been the wonderful man I know him to be (you have to dig under the sarcastic exterior to find it), and am thankful for. Thank you Dad.

-Finding and becoming part of a group of knowledgeable, supportive, and often humorous new friends in the world of testicular cancer at tc-cancer.com. I didn’t even search for or find this site until Kel didn’t reach remission after chemo, but they have been a wealth of information for me, and I have even been lucky enough to meet a family going through similar events recently. I am so thankful to them for a shared lunch, and a camaraderie that I felt down deep in my soul. I will meet more from that forum in April, and I have recently been welcomed as a moderator to the forum where I am grateful to pay forward the knowledge and life experience I have gained. Thank you.

-Although I really didn’t need it, I am grateful for the reminder of why I do cancer research. Watching mom go through it, and being by Kel for this year has just cemented my resolution to finding new therapies and deepened my commitment to my work.

-And on the note of my work, within this year I was able to interview for a few Assistant Professor positions, and I am thankful to have been offered, and proud and thankful to have accepted the position in Pharmacology at Ole Miss. While it is difficult to be apart from Kel, this is a wonderful new stage of my career, and I truly enjoy where I work, and with whom I work.

-For Kel and David. This last year has not been easy, or especially fun, a lot of the time, but through it all we (Kel and I) have grown closer, learned to appreciate each other more, laughed a bit more than we cried, and, well, Kel put me on a whole new pedestal that I can’t get him to knock me off of. For that part I am not so thankful. David has been good, bad, really bad, and really good all at the same time. It’s been a rough road for him to navigate through Daddy’s illness and to come to grips with so much loss in his young life, but he is doing really well and he has been a shining light at the end of a long tunnel of cancer. Plus he’s cute.

I am sure I will think of more later, and probably add more, but the last one I will say for now is:

-Cancer. Weird, I know, but since it fills at least half of my time, ¾ of my thoughts, and has ruined my diet (well, Dad’s cooking helped with that), I’ve decided to find something positive in it. Within it lies my true nemesis, and having identified that enemy I have a place to channel my violent tendencies (I’m not teaching self-defense here right now, so that channeling is good) … Cancer is tough, but I am more tough. Cancer really sux, but I don’t and I will win this fight. So I am grateful because I know my enemy.

And mostly, I am grateful to you – friends and family, near and far (I know I am totally cheating since I said the above was my last one). I give thanks to being loved.

Happy Thanksgiving, 2011.

Tracy

Pajama Sunday

Yesterday David and I declared it to be 'Pajama Sunday', meaning we never changed out of our pajamas. In fact, the only time we left the house was to take the dogs on their nightly walk, in a moment's respite from the rain.

*note: yes, this means that I spent a whole day without showering, but hey, if David didn't mind, why should I, right?*

It was ... GREAT! It was a cold and rainy day here in Oxford and we just didn't want to go anywhere or do much, so we 'pajama'd it' all day. And we baked a LOT - David loves to help me cook or bake lately and is constantly wanting to make 'banana bread', which is actually a double chocolate banana bread recipe from Ghiradhelli. So we made a beef stew (got tips from Dad, but I still need to work on what to add in it), orange shortbread cookies in Halloween shapes, and oh my gosh yummy orange chocolate chip scones (called for raisins, which I forgot, so clearly I HAD to replace it with chocolate).

And then we carved pumpkins. Of course by 'we' I mean I ... I am not foolish enough to give a four year old a knife ... well, not for too long anyway (I promise, I supervised the attempt at carving). I did let David draw on the pumpkins with some gold and silver glitter glue, which he loved.

All in all it was a nice day, albeit sans Kel. Only five more days until Kel will be here again, and none to soon for David who is REALLY missing Daddy. It is another short trip, but at least this time it will be for more than 48 hr (51, I think).

Oh, and before I forget, in cancer news ... yet more unclear, ambiguous, who the heck knows results. Kel's AFP (that all important marker) has been holding steady, but a bit higher than the normal, or at least borderline, so his oncologist wanted to do a CT scan and see. The good news is nothing new showed up. The unnerving news is that there is a 1.8 cm mass where the 5.8 cm mass used to be. Sounds good, right? Well, since that 5.8 cm mass was surgically removed, technically there should be NO mass remaining. The most likely explanation is that it is scar tissue, which can't be differentiated on a CT scan and can only be determined by whether or not it changes in size in future (i.e. at least 3 month) scans. I mean, really, it is 98+% sure to just be a scar from the massive surgery, but no cancer patient wants to get back a CT report that says 'mass'. Back to the world of waiting for a clear answer. The next bloodwork results are on November 8th, I believe. So prayers accepted, fingers crossed, mojo needed for steady #s. We'd really like to at least finish out the year in remission*.

So, what SUX? Ambiguity. Just be cancer or don't - but pick already.

What doesn't suck? Lazy, quiet, uneventful, all-day pajama wearing Sundays. All we were missing was a Sunday paper (comics would have been GREAT), and Kel. Almost perfect.

Off to the world of night-night bliss.

With love,
Tracy

New reason to be positive tonight!

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

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

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

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

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