What a difference a year(ish) makes

I haven't written since Thanksgiving, but today (or yesterday? We can't remember exactly, but think it is today) marks the 1 year diagnosaversary for Kel. And yes, we made up that word. He wrote a long note of thanks and reflection which I will post below (for those who are not on FB), but first I thought I would note what a difference a year makes.

To be honest, it is hard to believe it has been a year already. The first 6+ months were a bit ... ummmm, hellish? We welcomed in the New Year with Kel's surgery (aka removing the troublesome 'boy'), he started chemo soon after, etc. What we believed would be done in March (chemo) extended through June, didn't work, and onto surgery. Now we've had a 5 month 'cancer-vacation', but every month is worrisome and only time will tell.

We've also (kind of) moved across country, minus one critically important family member (Kel, of course), and have been a long distance family for about 4 months now. Hopefully Kel will soon be able to move to MS with David and I, although I know he is not looking forward to leaving TPD.

While a year ago we were in shock, today we enjoyed a day of NOT working on the new house (as we had been doing for the last week or so). A few pictures below, but we chose to drive to Tupelo, MS today - where Elvis was born - and do things entirely unrelated to cancer (or Elvis)!

We:

Went to the Tupelo Automobile museum, which is WAY WAY COOL! They had some late 1800s and early 1900s beauties:
as well as some later models (this, in case anyone is wondering, is one of my DREAM cars!):


We also ventured over to the Buffalo (really bison, of course) Park where we saw Bison, Zebras, Donkeys, Horses, Giraffes, and much much more. It was a fun and carefree day!

I've said it many times before, but I will say it again - to all of our friends and family, near and far, IRL and through various support groups, a BIG Thank you! May 2012 bring us all a year of love, peace, and comfort. We may not know what the next year brings, but if it has half of the love we had this year, we are in good shape.
-Tracy

Now, instead of a SUX section, onto my 'ghost writer' - Kel.

"Today is an important anniversary. 1 Year ago today I was diagnosed with cancer. I'm still here. Over the past year I went through chemotherapy and a couple of very invasive surgeries. I am doing very well now and feel great, but the fight is not over. I need to take this time to say thank you to everyone who has been there for me. My family, friends and co-workers.

First, my family. THANK YOU!! You were always there for me and stayed with me through all of this. I was cared for and loved and I want you to know how much it meant to me. I would not have made it through this with out you. Mom, Dad, Rachel, Ira, Grammy, Mimi, Bumpie, Brenda, Kathy, Trudy, Chad, Nancy, Jon, Shari (David), Sherry (Brooks), Brent and everyone that I am probably forgetting right now. It meant so much to me to know you were there by my side.

Friends, THANK YOU!! No matter what happened through all of my sickness I knew I could rely on you to take my mind off it and help me and my family cope with the reality of what was happening. It was a relief knowing you all were still there. I really appreciated Tim coming all the way out to Indianapolis for me, Bryan and his positive encouragement from Atlanta (and his Packers Predictions, LOL) and all the kind thoughts and prayers from everyone. It was incredible to see the support from close friends, acquaintances and high school alumni. Thank you Tim, Bryan, Alex, Craig, Ryan and again everyone that helped me stay positive through out this battle.

Co-workers, THANK YOU!! My brothers and sisters in blue! I always knew we were close but I never expected the outpouring of support I received. From my squad bringing me BBQ at my home just after I was released from the hospital to the help with the benefit yard sale and all the things you did for me on a daily basis. It was really overwhelming. I think "co-workers" is not really fair, you are all family too. Leanna, Rachel (Marquez), Scooby, Greg, Vince, Frank (Ortiz), Frank (Landholm), Stephanie, Anina, the entire Rapid Response Team and the Hostage Crisis Team, Sgt Merrill, Sgt Broderick, Capt Batista thank you all.

And lastly, my wife Tracy. There are no words to describe what you've done for me this past year. There isn't enough space on the Internet to say what I feel about how you carried me through this. You had so much on your mind already losing your mother the year before to cancer and then to go through it all again with me. You guided and supported me through each step of the treatment and in the moments in between. You cried with me, you laughed with me, and you kept me going when the future looked bleak. I LOVE YOU!! You even kept looking for the best options if I need more treatment, you never gave up. I saw this with your mother as well, you never gave up. You and David are my reason for being here and I love you both.

To everyone that I have forgotten to mention, thank you. Here's to another year. No matter what happens in the coming months I have no regrets and no fear because I know you will all be there again. I love you all!!

-Kel

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

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

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

Benefit Sale went well!

This weekend was our first annual 'Cancer Really Sux' benefit sale, and it went very well.

Over the past month, friends and family have donated their

gently used (and sometimes brand new) items for us to sell this weekend. We organized it, and this Saturday and Sunday we sold a LOT of it! We still have a great deal of donated items left, and will be donating it to a combination of the men's shelter, an organization to help te

ach women job skills and get them to work, the abused women's shelter and our local children's foster organization - Casa de los Ninos.

I took a picture of the stack of money we took in (mostly ones, of course, this was a yard sale), but it does look impressive. :)

We earned more than enough to help us cover our costs with traveling to Indianapolis for Kel's surgery, and with the additional money we will start the 'Cancer Really Sux' Memorial fund, a reincarnation of the Dena David Memorial Fund. Fitting, since today would have been my mother's birthday ... her 62nd. We missed her today, but honored her memory well ... by selling even some of her stuff! :) She always did love a bargain.

Unfortunately the new 'Cancer Really Sux" mugs did not arrive in time, but they will be in on Monday. Oh well, I will add them to the website and hope they do well there!

Onto Kel: He is doing alright, albeit still slowly progressing and in pain. This weekend reminded him of how much he still needs to improve before going back to duty. He seemed to get hot very easy (not hard since we DO live in Arizona), and tired after carrying just a few items (which he was not supposed to lift anyway). It is a slow recovery for sure. His next blooddraw is this week on Thursday and we get the results next week on Wednesday the 10th. Let's go REMISSION!! Let's hear the magic words.

I am sunburned, exhausted, and happy. I am glad it went so well, glad it is done, and glad to be in bed. Thank you to ALL who donated - stuff, time, or money. We couldn't have done so well without an amazing support group! As I mentioned this is the 'First Annual', and I hope to make it a yearly fundraising event. We will see how much the momentum carries us.

Goodnight to all, with much love,

Tracy

48.5 - good news!

First, sorry I didn't write last night after Kel's appt - I should have, but got caught up in teachy stuff and prepping for the benefit sale.

Yesterday we met with the oncologist to get the results of Kel's bloodwork. We were expecting his AFP (major marker that has been troublesome) to be between 50-60, assuming a normal half-life of 6 or 7 days ... and were were jumping with joy when we heard 48.5! This puts the clearance of the protein back on track (rather than rising like it did through the ends of chemo and before surgery)! Assuming this keeps going, which we fully expect it too, he will be in remission by our next appt in early Aug (8/10, to be exact)!

Let's go REMISSION!!

What a wonderful word that will be to hear for the first time. I think I might cry in joy. :)

The next blood draw is on 8/4 with results on the 10th. He is having an ultrasound of his kidney this morning to make sure all is ok after the stent removal (fiasco) on Monday, and things are trucking along. Kel is slowly healing and feeling a little better each day. He even went back to work for the first time in 3 weeks yesterday! :) By the end he was tired, but he did GREAT (can you hear my good mood through these words today?).

The rest of us are doing well also - David has had a few really good weeks. The psychologist's advice of not having us suppress his aggression (let him get it out when he needs) has seemed to help a lot. He has been good at school and good at home. He is always asking how Daddy's belly is, so I think he is looking forward to Daddy getting better and playing. :)

I am prepping for the benefit sale in 1.5 weeks (ACK!). I've separated out the donations, started pricing a few items (getting help on Sunday from great friends on the pricing), the mugs will be here in time, and the shirts will be back too. :) I'm making an order form in case (we hope) we run out of shirts or mugs, and have borrowed some tables for the sale. It should come together nicely!

In the meantime I am a teaching and grading machine ... and somehow still behind. This is the last week for my online class so I am scrambling to grade, only 2 weeks into my summer course, so I am racing to get lectures ready, and .... sleep? I can sleep later. It is hectic, but it will all be ok.

That is about it from here: what doesn't suck is DEFINITELY good AFP numbers and being on the way towards Kel's remission! We won't know if or when the #s will rise again and we may have to face the high dose chemo still, but we will accept and celebrate ANY positive news and step in the right direction. So today, as the students take their tests in front of me (shhhh, don't tell them I am writing a blog while they are struggling with exams) I celebrate the POSITIVE!

Thank you,

Tracy

Pain today, gone tomorrow

Ok, I am really, really tired, so my 'Title' was lame. :) Sorry!

Kel had the stent removed today - FINALLY - after it being in for 7 months. Unfortunately, he was awake for this procedure and it was agonizing (only way they could fit it in before September, apparently). A small bit of lidocaine at the 'entry point', snaked up through the bladder and removed the stent from the ureter. Apparently the stent was quite calcified, so Kel is essentially dealing with stones right now. Oh, joy.

The rest of the day he has been in significant pain and discomfort, but the blood in his urine is decreasing.

It is unfortunate that he had to be awake for that procedure, but he is quite glad it is out! The next big event is a meeting with the oncologist on Wednesday to get the results of the b/w (need the AFP #s to go down to 50-60) and an ultrasound follow up on his ureter on Thursday to make sure it doesn't need to be replaced after the stent is out.

For now there is no chemo or anything else but surveillance planned, and hopefully we can get an idea on Wednesday about scheduling that all (monthly, every 3 months, etc).

Otherwise, we have just been planning for the Benefit sale in just under 2 weeks (ack!). I need to start making signs and have been organizing all of the items for sale. I will be creating an 'Event' on Facebook (not tonight, too tired and have to teach again at 7am), so if you are in Tucson, keep an eye out!

So to end tonight, a quick (if not obvious) sux - I would have to imagine that being awake while having a tube removed through your bladder and 'out' would REALLY have to suck! The subsequent pain and blood has not been pleasant for Kel either, but it is out and this is one more step closer to a break!

Half asleep now, so good night!

T

Destapled

As I expected, we did not get much sleep last night, so we are both exhausted and soon going to bed.

I did, first, want to let everyone know that Kel had his staples removed today! He is metal free and covered in steri-strips. There were 33 staples removed (he had me count). The wound is healing well (yeah for good news!) - see below.

He is still not sure if he will go back to work tomorrow. The pain is still plentiful, and he is tired often. We will see what he can handle tomorrow.

We still haven't heard about all of the upcoming appts, but it looks like he will have blood drawn on Friday, the stent removed on Monday and a follow-up with the oncologist on Wednesday. Things are moving along. If all is going as it should with the AFP in his blood, we should hear that it is 50 or less.

What doesn't suck for today (going for more positive) is that the removal of the staples was not as painful as Kel had anticipated and he did well. Only a few 'stung' because of the scabs already forming. He will have a gnarly scar, but it is slowly healing.

Off to sleep now,

T

Cancer won today (not in reference to Kel, but includes an update on him)

First, I am sorry that I haven't posted in a week. Everything is really busy with another summer semester starting and I am more than burning the candle at both ends.

I will update about Kel first, and then vent/scream/cry about a friend below.

We finally got the pathology back from Kel's surgery. The mass they removed was pretty large - about 10+ cm x 6 or 7 cm. They found teratoma, seminoma and yolk sac carcinoma. We were a little shocked that there was no embryonal carcinoma (which was all that was found in the original mass).

The good part is that yolk sac is known to produce a lot of AFP (the marker in his blood) and explains the increasing #s. Also good is that there were some lymph nodes on either side of the mass that were free from cancer, at least anything visible. That doesn't mean this is definitely a cure, but clean margins are a good sign.

Kel has his staples taken out tomorrow, his stent on Monday and should see the oncologist again next week after more b/w to see if the #s are still going down. He is feeling a little better everyday, but it is a long and slow process. He is planning on going back to work on Thursday, but we will see.

Ok, the rest below is saddening and maddening and makes me want to go pour bleach on all of the cancer cells at work since I really just need to kill cancer today. It is not about Kel, so if you are having a bad day yourself and don't want to read anything sad, please stop now.

Today my dear friend Christy Ley Hood lost her fight against Acute Myelogenous Leukemia. The end was fast and shocking and we are sad.

I first met Christy after Kel and I had a few miscarriages and we were undergoing all of the testing and fertility treatments, etc. I joined up with a group of women online going through similar experiences. It is there that I met Christy - aka the Screaming Bird.

Christy was funny, and as vulnerable and torn as I was. In a group of wonderful and supportive women, she was one of the most involved. We spoke often, and though she lived in GA and sadly was one of the women I never had the honor of hugging in real life, we were all bonded as friends for life.

Christy had her daughter, Sarai, soon after David was born. Sarai was the light of her life. She is a beautiful 4 year old who I dearly hope will have wonderful memories of her mother. Even when Christy knew her leukemia had relapsed and it was dire, she endeavored to make sure that Sarai had a special 4th birthday party before checking into the hospital.

Christy was diagnosed near the end of mom's disease, and when mom passed, I shared some of her scarves with Christy. When Kel was diagnosed in December, Christy was in remission, but she was quick to befriend Kel and become a great cheerleader for him. She raised the spirits of us all.

One year into her remission, Christy learned that the leukemia was back and she needed to get ready for an immediate bone marrow transplant. She never got that far. With no immune system, she quickly succumbed to an infection that put her on dialysis and into a coma and today we learned that she was lost to this world.

The news hit hard all around the country, for the depth and breadth of lives touched by this special woman was large. Kel had only known her for a few months, but felt her power just as much. When I heard, I cried and cursed and cried some more.

Christy fought SO hard against the cancer, in her path to having Sarai, in life. She isn't supposed to have lost. She isn't supposed to be gone.

This reminder of how much this disease can rob need not have come. I know it. I get it. I live the day in a day out of it as Kel and I fear for the future. We hope and we fear. We hug and we cry. We just don't know. And then it just pulls the rug out again when we lose someone who is supposed to be in remission and surviving. What good is remission if it can be stolen away? What good is hope if it can be devastated?

I find myself for the first time screaming 'Why' to the heavens! Why?

Damn it, cancer sux. Cancer f'ing sux.

Christy, you may be gone from this world, but your light shines on and you will always be remembered with love in our hearts.

Hoping to get some sleep, but doubting it,

T

Worst. Travel day. EVER.

Ok, maybe not ever, I am sure others have had it worse, but today was miserable for all.

First, our alarm at the hotel in Indy never went off. Thankfully I am a fitful sleeper when we have to be up for something, so we only lost 15 min.

We made it to the airport on time, boarded, and waiting at the gate. Then on the tarmac. And then some more. So we didn't take off until 45 min late.

The plane made up some time in the air, but not enough, so even though we could hear our names being called, it took too long to go from where we landed to across the ENTIRE terminal in Minneapolis to our new gate, even racing on a cart. We got there just in time to see them close the door.

Not good.

So, we are turned away and I go to rebook. We get routed through Pheonix 3 hours later and then onto Tucson. As for where Kel can rest? Just some random gate is where we are referred. But Kel went up to the gate assistance area and we got referred to traveller's assistance where they were nice enough to let us use their cot/rest room hidden away. Kel was able to lie down, as was David for his nap. Made the next 3 hours much better.

Then we make it to Phoenix where they don't have anyone ready to wheel Kel in the chair over to the other terminal (I officially hate the PHX airport - you have to leave one terminal, take a bus to another, re-go through security and get to another gate), so by the time that all gets figured out, we are running again.

This time we make it, get on the tiny, cramped airplane, taxi out ... and wait on a hot, hot plane with no working a/c. And we aren't allowed to take off because of the storm in Tucson, so the plane goes back to the gate and we de-board.

By this time Kel is in pain, exhausted, frustrated and just miserable. No news on when the plane will be leaving and we start calling car rental companies to see about a one-way trip. CRAZY! One company wants $130+ and another wants ~$250! Yet another doesn't do one way rentals, and by the time we went through all of that, we are re-boarding the plane.

During most of the trip, David was a nightmare, kicking, hitting, throwing fits, etc. But at least at the Phx airport, he was good for a while!

This one finally takes off, and about 7.5 - 8 hours later than we were supposed to be, we are home.

And we get home to a downed tree in our front yard (which our amazing neighbors were nice enough to move out of the driveway so we could park) and no power. David had to crawl in through the dog door, and we lit some candles, but now we are all set.

So for sucking tonight, An exceedingly long travel day so soon after major surgery with Kel in massive pain and exhaustion only to come home to 1/2 disasters ... but what doesn't suck are the helpful volunteers at the Mnpls airport who found a good place for Kel to be comfortable - thank you.

Oh, another sux is Beki, who didn't have her phone on her when I txted our 3 hr delay! I could have enjoyed her company during that time, had a cake ... you know, enjoyed my time! just teasing, B!

Time to sleep now,

T

On the mend

Sorry I didn't update for a few days, took Friday and Sat off.

Kel is doing a LOT better - slowly but surely. He is still in the hospital because he had a bout of vomiting last night/early this morning that they wanted to make sure was ok (seems like his intestines weren't so keen on being moved away for surgery, then put back in and still be expected to function? Plus he isn't eating so ... yeah, not happy intestines). But he is in a LOT less pain (pills every 10 hrs or so, rather than every 4) and moving around really well.

For those interested, I will post a picture of his scar below ... for those not? Well, don't look. :)

We still don't know anything about pathology. However, we did get good news on his biomarkers today: the important one went from 390 on 6/20 to 214 on 7/3! Presumably, they were up even higher from 6/20 until the surgery on 6/28, so this decrease is fantastic news!

Just as a reference, this protein (AFP) has a half-life in the bloodstream of ~ 1 week, meaning if he started at 400, 1 week later it should be at 200, one more week at 100, etc. Presuming the normal clearance, he should be (FINALLY) in biochemical remission in early August! PLEASE?!?!?!?!

What else ... David is getting stir crazy, although still being mostly good. He keeps asking me if he can go to school today, or when are we going home? He needs to run more than he can here, but Kel should be released tomorrow, my Dad will go back to Vegas and the next morning we fly back to Tucson. From there he can run.

And to those I haven't emailed, or who haven't seen the posting on FB: We decided to have a 'Cancer Really Sux' Benefit/garage sale for Kel, and for my 'Cancer Really Sux'

research efforts (an extension of the Dena David Memorial fund).

The sale is being planned for July 30 and 31 (my mother's birthday was the 31st) and we have stuff to sell, plus are asking for donations of items that are being cleared away in 'spring/summer cleaning' from our Tucson friends. For those in Vegas - my father may be driving down, so he can bring a few things too! Just email me.

I am attaching the asking for donations flier here. I will also be selling my 'Cancer Really Sux' t-shirts, hopefully will have mugs made, and can take orders for the personalized messenger bags. :)

That is about all I have, so:

What sux is still not having the pathology report, but I am sure we will soon. What sux is having to stop David from hugging his Daddy when that is all he wants to do when he sees Kel, but that would be too painful (see scar below). What sux is having a cancer benefit sale on my mother's birthday - just because there is too much damn cancer.

But what doesn't suck is FINALLY seeing Kel's AFP #s go down again! Having an indication that things are back to moving towards a CURE!

What doesn't suck is having the love and support of family and friends behind us always.

We love you,

Tracy

I warned you ....

High amount of pain, but also high spirits

This will be a short post, because I am tired. :)

Kel had a rough 1st night post-surgery - heavy amounts of pain from a lot of muscle spasms. This continued into the morning, when they finally agreed that the initial pain meds in his spinal column were no longer effective and allowed a more frequent administration of muscle relaxants and pain meds. So, with valium ever 2 hr and his pain pump everything was contained much better. There were still spasms, but much fewer and far between.

Kel's biggest trouble with causing spasms was actually the rest of us making him laugh! We were trying not to, but in a room full of smart asses that is hard. :) If he laughed, the spasms started. Sorry!

Despite the pain, and when he was awake, Kel was in good spirits. He smiled, tried to talk and joke, and seemed happy again at having the mass out of him.

He isn't moving around a lot, but he has gotten out of bed and into a chair a few times today - which is great progress! Tomorrow will be more, maybe even some walking a bit by the end of the day? He is breathing well too - which is important for avoiding pnemonia.

In terms of what we know about the overall cancer - nothing more. No pathology back yet, and no bloodwork taken until a lot later. I will post when I know more about that.

That is about it for the report. The rest of us (Kel's best friend Tim, his parents, my Dad and David) are doing well. Actually my Dad, Kel's dad and Tim were up so late talking the night before (after 2am) that they were all exhausted today and had to take naps, like David. I think only the women toughed it out today. :)

Tomorrow Tim and Butch will go back home, Sue the next day, and my Dad will stay through Monday. We aren't sure, but I think Kel will be released on Sunday and we will return home Tuesday.

Thanks for reading!

Tracy

Surgery report

Kel had his RPLND (RetroPeritoneal Lymph Node Dissection) this morning in Indianapolis. Surgery started around 9:30, surgeon estimated taking around 4 hrs but was done in 2. Not a bad thing, he just does so many of these that he is that good.

I need to get more specifics tomorrow, such as the overall size, how many lymph nodes were taken out, etc. But in general, the surgeon was happy with the removal. The kidney was saved, the vasculature wasn't touched, with one exception (in a minute), and the abdominal wall wasn't touched.

Kel's ureter (drains kidneys into the bladder) had the tumor adhering to it, so that was the toughest part to remove, and the stent was left in. That will come out in another month, but taking it out today after the adherence apparently would have been very dangerous. Also, one of the arteries to his left kidney was so ensconced in the tumor that it had to be removed. But that is ok, because it is not the only blood supply.

So, for now, all looks good. We have no idea if this was curative and won't for a long time. The important things to come soon:

-Pathology. We want to know that there is active cancer in there, which is a little unusual for this surgery: most people have this after chemo and after they have no biomarkers and want to see no cancer. We know that his markers have been on the increase since April, meaning his tumor is growing and we want to hear that it was in the parts removed. If not - then the 'active' cancer is still in there and needs to be dealt with, but this is highly unlikely.

-Biomarkers. Before surgery they were: AFP 390 and b-hCG 14, both increasing steadily. These shouldn't be down to 0 before he leaves the hospital, but we should see them down a bit, again indicating that all of the active cancer was in the lymph nodes removed.

For not knowing about a cure: Kel will continue to be watched by bloodwork and CT scans for increasing markers again and any new nodes. The chance of this surgery taking care of it all is probably somewhere around 50%. The lymphatic system is like the circulatory system in that it is a fluid system going throughout the body, so a few cells escaping can float around and take up residence elsewhere and go unnoticed for some time. So we watch.

If he reaches the one year mark from now with no increases, he can relax a lot more, according to the world's expert doc (Einhorn), so every 'markers' and results day will be stressful and dreaded. We will hope and pray and watch.

In the meantime (this is the not sux section for tonight), we celebrate. Well, Kel doesn't celebrate, he is mostly knocked out. He woke up having some bad muscle spasms, dry heaves and heavy nausea which did NOT help in terms of pain, and a bit of disorientation. He is pretty well medicated tonight and we have to get him up and moving around already tomorrow. Not a fun recovery, it will be a month before he can get back to physical activity, which he needs to do before he can even think of going back to full duty, but a recovery none-the-less.

Back to the not sux:

For the first time since the New Year, Kel will get a break - no chemo, no more surgery (ok, that is a lie - he has to have the stent removed in a month), no constant thinking of it all. Markers will (should) go down, he will be thrilled to see biochemical remission (no elevated markers), which he has yet to acheive, and life can resume a normal routine. We are so glad for a successful surgery, an easy removal and a hopeful surgeon. We even, after dinner, celebrated like 4 year olds swinging our cares away!

Full of love and hope tonight,

Tracy

Back to Indy tomorrow

It has been a while since I posted, so I thought I should jump on and write an update.

In between the last trip to Indy and now, not much is going on. Life is moving forward, creeping towards the surgery this week. Glad it is almost here - Kel is SOOOO happy to be getting 'this damn cancer' out of him.

Last week he had a CT scan to map the tumor in his back and good news is that there are no new sites of metastasis evident (would have decreased the curative potential of the surgery) and the main mass seems to have shrunk a little more (although they only gave one dimension, so hard to really tell).

Bloodwork this last week was less reassuring, but not unexpected. The tumor markers are rising, rising, rising, but without chemo what else would they be doing? Slightly disturbing is also a question of kidney function since Kel has protein, glucose and blood in his urine, but with the surgery the stent will also be removed, which may be the cause of some of those issues.

So the plan is:

Fly to Indy tomorrow (Monday), when my father will also come out.

Meet with surgeon on Tuesday, Kel's mother, father and best friend will also arrive in Indy (it is going to be a lively 3-bedroom suite!).

Surgery on Wednesday, checking in at 7am, surgery to start pretty early (10, I think). Could be a long surgery- I have seen estimates ranging from 3-10 hrs, but Kel's should be more like 6-10 hrs. Oh joy - I am glad we will have many people to keep David entertained over such a long period of time.

I will post as soon as we know anything on Wednesday, but it is going to be a long day, so don't expect much. :).

The following is what sux:

Since the last chemo, Kel has been doing mainly ok, but getting sicker and sicker. His stomach is bothering him more often, he doesn't eat as much and last night he was extremely nauseous. It is strange that he felt better through all of the chemo than he does now, but a lot of it could be nerves too over the upcoming events, and mainly the success of the surgery. Kel is still tired a lot - takes naps most days when he isn't at work, and on days he does work goes to bed early. At least after the surgery he will have a break from all of this while he heals and while we wait to monitor his blood and with CT scans to see if anything new pops up.

The waiting will be torture, but if after a year nothing new shows up chances are high that he is in the clear. Can never be sure, and they will monitor for 5 years, but 1 year is a good mark. Of course, being somewhat realistic, chances are at least 50+% that the surgery alone won't do it and that the tandem transplant will still be needed. We are planning for that (well, planning for 2 months off, at least) - back to hoping for the best but expecting the worst - but hope to be wrong.

Kel has never actually achieved a remission, he has never had his markers normalize, never been off 'treatment' for a long time. During this upcoming post-surgery time we anticipate his markers normalizing for the first time and for some semblance of a remission. The fear will be high every time he gets checked, and it will never be far from our minds, but he - and we - will take the brief reprieve.

Thanks for reading,

T

Met with specialist today

We met with Lance Armstrong's doc today and we both feel a lot better.

Kel's exact dictation for this was "my husband feels some relief, even though he is in a lot of pain, he feels a lot better. The end.

For those who want more specifics:

The plan has changed. It will no longer be the tandem transplant, for now. Kel will undergo what is called 'salvage surgery' in 2-3 weeks. The will remove the main mass, and all of the surrounding lymph nodes on that side. It will be a long surgery (4-6 h) and he will be in the hospital for ~ 5 days. This will all be in Indianapolis with the world's best testicular cancer team.

Just doing the surgery has about a 30-40% cure rate, although the surgeon anecdotally believes it to be considerably higher with single site disease, like Kel has. Should it not be curative, the tandem transplant is still available. But at this point with chemoresistant disease, there is a better indication for surgery (which Kel has wanted since he first learned that the initial chemo wasn't curative - 'just get this damn thing outta me').

A confident and wonderful oncology team DO NOT SUCK!

Thanks,

T

Indianapolis

Sorry I haven't written in a few days - it has been a bit of a whirlwind since we stopped the chemotherapy and opted instead to see the expert in testicular cancer - the doc who treated Lance Armstrong.

I emailed Dr. E last weekend, gave him a brief synopsis of Kel's case, he recommended stopping chemo and we see him tomorrow morning at 9:30 am for a consultation. What we anticipate is escalating treatment to the tandem transplant (they will harvest Kel's own blood cells, then go through the following cycle twice: high dose chemo, would be lethal myelosuppression, then rescue by giving back his blood. We will know the cure rates, expected outcome, etc tomorrow.

We are not yet sure where this therapy will take place - I have heard some concerning reports about the BMT team in Tucson, so it may be better to do it in Indy. We will see what Dr. E recommends tomorrow (oncologist in Tucson suggested doing the therapy in Indy might be a good idea).

Just a quick report, and I will write more tomorrow night after the meeting. We are taking advantage of being in Indy to have dinner with an old friend tomorrow, and hopefully seeing another friend in the afternoon, so it will be a busy day too, then back home on Friday. I leave again on Sunday to visit Mississippi for a week. Whew - it is going to be tiring!

No Sux tonight, doesn't suck - definitely being in Indianapolis and moving one step closer to Kel kicking his damn cancer's butt!

Night for now,

T

New plan # .... I lost count

I was in contact, via email, with the expert in Indy (the doc who treated Lance Armstrong, btw) and he told us to stop chemo now and get to see him this week. So that is what we are working on. Kel will be escalated to the tandem transplant next, hopefully to start this month.

Thanks,

Tracy

A quick report

Kel:

Day 3 of this cycle started today. Kel is handling it well overall, just the same fatigue. His is quite anemic, so his energy level is correspondingly low. The doc even talked today about doing a blood infusion to help with that, but voiced some minor concerns about risks and side effects associated with that. I wasn't there, so Kel decided to wait, and I didn't see the doc to ask him about it. We will see tomorrow.

He has also gained 7-8 lbs over the last 2 days from all of the fluid they are giving him. His kidneys are functioning ok (per this morning's bloodwork), and he will get a diuretic after he is done.

Kel is not yet immune supressed (meaning his white blood cell counts were find, even on the high end), but that should happen by the end of this infusion time. His hair is falling out again, which is strangely comforting because he knows at least the drugs are getting in and doing something.

He may ask for another marker count before he leaves the hospital, but not sure yet.

We haven't gotten to see him much today - he's been sleeping, and David is only not restless in the hospital room for a certain amount of time. So we went after karate this morning, and then back home for lunch and a nap. Came back ~4 and were home for supper since Kel was sleeping). Tomorrow would be our normal Sunday morning family breakfast out, so I think we will pick it up and bring breakfast to Kel.

I am doing a little better over the last two days. I am less angry, less sad, more focused on the day to day. I do miss Kel a lot, since I haven't been able to spend time with him much - he sleeps a lot at night and I don't want to disturb him, plus David ... otherwise we are just trucking along.

We were sad to say goodbye to Rachel and Butch this morning. It was a great visit, and I am so glad they were here to spend good days with Kel, sorry they were here for all of the stressing, and grateful for their love and support.

I am beat down, more emotionally tired than physically, so I am going to cheat to end tonight:

Cancer Sux.

My good friend Christy found out on the year anniversary of her 'remission', that her acute leukemia is not gone and she is rushing around to get things set up for an urgent bone marrow transplant (autologous, meaning from someone else, as opposed to the one that Kel will likely undergo, twice, which is him donating his own marrow/stem cells). She is running around trying to set up her daughter's 4th (I think) birthday party, the impending arrival of her first granddaughter, and anything else urgent. Her spirit is beautiful, and the news is crushing ...

Cancer really sux.

With much (tired) love,

T

It's all quiet on the western front

It is a quiet night here in the Brooks house. Rachel and Butch are asleep, exhausted from the emotional toll and unknowns this week. Kel is in the hospital getting chemo, but he was too tired for a visit from us tonight, so we haven't seen him since ~3pm, and David didn't see Daddy all day.

It is just me and Saja in my bed, and a big empty space where I wish I could hold on to Kel.

Ooops, should have warned you ... not doing well tonight, gonna be all gloomy and depressing, this would be the 'venting and whining' section for today's post. I did post earlier today (below) about how Kel is and the plan.

So back to all quiet on the western front ... it is quiet, just the fan is making noise. And all I want to do is scream from the roof top at the top of my lungs:

I

HATE

Scratch that ....

I

F*#ing

HATE

Cancer

Really, Really, Really hate it. Stubborn stupid ignorant angry cancer.

Not responding to chemo cancer. Not acting like it should cancer. Not dying cancer.

I hate you, cancer.

Ok, writing that helped, cause screaming would wake up the house, and no one needs that.

So, as you can probably tell, not a happy day. Kel is getting his second round of salvage therapy today/over the next 5 days because there is little downside (you know ... other than the crappy side effects of chemo. I am chastising myself, because really, how can I call that little downside??) to it. We have to wait until later in the month to get a consultation with the world's expert in Indianapolis, need to be sure that the chemo isn't doing anything before moving onto the tandem transplant, and not doing anything will ensure that the tumor grows. So ... we (and by we, I mean Kel) are trying another round. Why the f#$k not?

The good side ... David was good at school, although still complaining of an icky tummy :( He had his second swim class and other than being stubborn (proclaiming, 'no, I don't want to' when asked to put his face under water) did well. He had a good night, watched a Scooby Doo and went to bed late.

Kel started chemo at ~2 or 2:30, finally, and had a nice visit with some of TPDs finest, in shifts, before that. Please, for those who want, really, visit him as often as you can or want. It is good for his spirits and his boredom.

I am in a crappy mood tonight, missing Kel, hating cancer, and struggling to contain it all to be completely honest, so I will end with a 'Doesn't suck", because Kel told me I always have to end on a sux/not sux note and there was already enough 'sux' above.

Hmmmmm, what doesn't suck?

Ok, when I step out of my "down and all about sucking cancer" world that is easy ...

Loving, supportive, try to do whatever we need to help family and friends DON'T suck. We are so fortunate to be surrounded both locally and around the country and world by so many who care and want to be here for Kel and David and I, and I am grateful. Kel's best friend is back in NY and told me he just wants to jump in his truck and start driving here tonight (we love you, Tim), but is already planning a trip for later this month and I told him to stick with his plan. Kel's friends at work are so wonderful in offering to help with whatever we need. My friends help so much with playdates and meals and ears to listen and shoulders to lean on (virtual and physical all included there). And Kel's and my families ... wow, I don't know what we would do without the love and support that pours out of them all.

So I will back out of my bad mood just long enough to say:

Thank you.

Now I crawl back into my pit ... at least for tonight.

T

New plan/ongoings

Brief report, here is the new plan:

Kel is going to get this second round of chemo starting today (at some point), even with the indication that it isn't working (biomarkers increased post first treatment). The thought process here is that we have to wait for the next parts (below), and doing nothing has no benefit. The chemo may not do any good (i.e. his tumor may not respond), but the harm is minimal, so it is worth the small possibility of a benefit.

In the meantime, we will be working to set up the tandem transplant to be done here, assuming we need to escalate.

Also, we are traveling to Indianapolis later this month to consult with the world's expert, Dr. Einhorn, about what is the best course of action for this stubborn cancer.

So overall the lack of response is worrisome, we are jumping on the next step and keeping spirits as high as they can be (but honestly barely treading water).

For those in Tucson, Kel is in UMC in 3NW, text he or I for the room number. His direct phone # is 520-694-3156. Visitors are welcome (and appreciated), call or text as much as you like.

All our love,

Tracy

Short report

Yesterday Kel's oncologist didn't have any biomarker numbers due to the snafu at the center, but told us he would bet us 'bunches of money' that they will be down. He called this morning and ...

they went up.

Then he went on to say that this was not a concern, that it is more important what happens at the end of the second cycle, but we are not convinced. There is evidence for a surge in the biomarkers with the first round of chemo, but that happens at day 5 right after he infusion (which did with Kel, his #s went from 49 just before therapy started to 98 by the end of that week), but then a normal half life is expected and the #s should be down 2 weeks later. I did some extensive searching today and there is no evidence for or mention of a prolonged 'surge' and elevated #s being a good thing.

But Kel checked into the hospital today anyway. They aren't starting chemo tonight since he didn't check in until 6:30 pm, and I will be there tomorrow morning when his oncologist 'rounds' to go over this. As far as we can tell, the increasing #s means that he is not responding to the new VIP chemo, and that it is time for either the tandem transplant or surgery.

Not a good day.

Cancer Sux.

(on that Rachel, Butch and I were all wearing our t-shirts today out at Walgreen's after leaving Kel at the hospital and someone asked about them and I gave him a card to find the website!).

Needing some serious sleep,

T