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

From good to ... well, nothing.

Drumroll please ....

And the numbers are ...

We have no idea. Kel had 3 vials of blood drawn on Friday and they seem to have disappeared. I liked my father's reaction the best - Vampire tea party? That actually got my to laugh through my anger.

Not sure what happened, and we have been waiting and waiting (and Kel has been nervous and scared over these #s) for the AFP. And ... nothing.

We did find out that during the week he was in the hospital getting chemo last cycle that the AFP doubled from 49 to 98. The oncologist said that was a good sign that the cancer cells were dying and releasing 'extra' of the markers they were making. Possible, since the doubling in a week was considerably more accelerated than before.

So Kel had more blood drawn today, we have no idea if the last cycle did anything because there is nothing to go from (darn Vampire's getting thirsty), but the plan is still for him to check in to the hospital tomorrow for inpatient chemo for a week. Apparently, though, there is a hold up with insurance authorization - the personnel scheduling this all forgot to do that part?

I am so darn angry tonight. Well, actually, I was fuming today - on the way home from the cancer center, Kel told me he was afraid to talk because he would say the wrong thing and upset me even more - sweet of him, but I wasn't angry at him, just at everything else. I actually feel bad for making Kel scared of me.

It's funny, I don't actually remember all of why I was mad today, other then pent up anxiety and no answers. We went to the urologist for an appt this am, he decided it is long overdue time to change the stent in Kel's ureter, but scheduling that is a bit hard in between chemo, me going on a week long trip, and more chemo. I actually got the dates wrong and have to call and fix it.

Then I went to work, nothing maddening there this am, although did get news later that all of the cell lines for one project are full of a mycoplasma infection (nasty little bugger that it tough to get rid of, and means that the experiments that have been ongoing have to be all stopped for at least a month). It's no ones fault - that is something that we have been fighting in these cells, in particular, for years.

Then the waste of time doc's appt. No news, nothing. Actually, I get even more mad at the 'well, I am sure the numbers went down, I am not worried about this not working'. Ummm, well, that is great but hell - we ARE! There was a big deal made about seeing the AFP results in between cycle 1 and 2 of this new stuff and being an indicator of whether this is even working or not and whether it is another cycle or the tandem transplant, or a rescue RPLND or ... who the hell knows what else. And ... ummm ... I am sorry, but your crystal ball tells you they went down? Uh uh. No sir. doesn't work. Evidence, please (Dan, btw, shhhhh about this. I am just in mega-vent mode. Oh, and skip the next part too).

So I have decided that anyone interested in being an oncologist needs some personal experience with all of this. Not necessarily a survivor, but maybe a caregiver, or a close family member or friend. Because then there would be an understanding of how that DOES NOT work for us. All of the fear and anxiety has no outlet! Well, except for a nap from Kel.

I have been in this field for a long time, and I saw my mother go through this, and my father take care of her, and her friends love her, and we were close and I was there with her to make decisions, etc, but it is different going through it this time. I don't know if it is because I live it more day to day, if it is because it is my 37 year old husband and not my 58 year old mother, if it is the hope turned hurt, if ... hell, I just don't know. But it is a different take than I ever knew before.

On the upside, David had a good day staying home with Grandpa and Aunt Rachel - he was good for them (I wasn't around for him to defy?). And he had his first swim lesson tonight with his bestest little friend Doyoon - they were adorable and David did a great job. Then, of course, the defiance came because mommy was home, but overall he did well today. And hopefully his stomach is getting better enough to go back to school. pleassssseeeeee???? Can something go right for someone's health here?????

For me, no big health issues other than a complete inability to breath well lately and a feeling like I am being strangled. Maybe psychosomatic and anxiety related, but more likely my autoimmune disorder acting up and beating up my thyroid which is making it swell, and me feel like I am being strangled. No big deal ... except for that difficulty breathing. I will make a doc appt for myself someday. Ha, like I could fit that in.

Man, am I on a bitching role tonight, or what? and this is getting too long.

So, in other good news (and I am not being facetious (side note, that is the only word in the English language with each vowel, once in alphabetical order ... one of my favorite words)): The RPLND surgery is not simple or minor and one of the most important factors deciding overall outcome (survival, relapse free survival, etc) is how skilled the surgeon is. And the best in the country, if not world, are at Indiana University, or Memorial Sloan Kettering (with a smattering of other good ones around). So we talked to the doc and we will be sent to IU when the time comes to see Dr. Foster, which makes Kel and I feel a LOT better.

That, of course, means figuring out how to get the 3 of us there, and where to stay for 2 weeks, etc, but that will be next. We have to figure out how to fund this all (t-shirt, anyone? ;) ), but I am thinking about having a Cancer Really Sux garage sale, or a Support Kel benefit dinner (maybe from a Cordon Bleu chef in training? wink, wink, hint, hint ... in Vegas, of course), or something to help. The timing of this all sux too.

Oh, and to add more to complain about, this morning my friend Christy (AML) also got news that her disease is sticking around and she is checking into the hospital tomorrow (in GA) too and getting ready for a bone marrow transplant. Cancer F'ing Really Sux!

I am sooooo going to cheat here - for tonight's Sux portion, see the entire post above, annd thanks to all who put up with the above ranting and venting. I appreciate it.

G'night, sleep tight, don't let the bed bugs bite.

T

A good day

Kel's father (Butch) and sister (Rachel) are in town - they got in on Sat afternoon and I think they are here through Sat. Since today is Memorial Day, we all had an extended weekend and got to spend today together, so we drove ~90 miles down to Bisbee, Arizona.

Bisbee is an old mining town - really part of the old west. We actually had to drive through Tombstone, AZ to get there, where we saw some actors dressed up in old west garb - it was neat. In Bisbee we walked around a bit, grabbed some lunch, and then went over to the Queen Mine for a tour. It was cold in those caves, but a neat ride on a railcar/underground train. Kel took a lot of pictures on the camera, and I will try to post those. The tour started at 2pm, and David still hadn't napped, so I spent 1/2 of the tour carrying around the dead-weight of a sleeping 4 year old. It was a time enjoyed by all, though (including the sleeping boy).

We stopped at the grocery store on the way back and grabbed some steaks and corn to grill. Butch and I made dinner, and it was DELICIOUS! A little Montreal Steak Rub on the steaks, and some grilled corn with butter was fantastic. Kel and Rachel, who are only 5 months apart so they were always in the same grade, got to talking about with whom they are still in contact, and old stories, etc and they had a grand old time! I went and grabbed their senior year yearbooks from high school and Rachel even had fun reading through all of the messages written in Kel's yearbook and deciphering them. It was a great distraction for tomorrow.

Tomorrow there are 2 doc's appts. The first is in the am with the urologist about the stent that is still in, the pain that Kel is back in, and even the blood that shouldn't be there when he pees (maybe from the stent? It's been a week now).

Then at 2pm we will go to see Dr. Ahmann and find out if the first round of VIP chemo did anything for his tumor markers. If it did, then the AFP marker should be down <10. So any thoughts, love, prayers, or good vibes welcome for low #s! I will update tomorrow night. Right now we are worried, scared, and nervous for tomorrow. The last day we built up to find out #s didn't turn out so well (4/15), but hopefully this one should go better. We are also going to talk to the doc about who is the best in the country to perform the probably needed surgery, called an RPLND. This is no routine procedure, so we need to find out who it will be so that we can make arrangements if we need to travel for it (Indianapolis is likely, NYC is possible too).

Tonight's sux, in list form:

1. Waiting

2. Not knowing

3. Waiting and not knowing and imagining the worst

4. Poor David's belly. Not sure what is up with him - he had a fever last week, then was better, then a day of diarrhea, then 2 better days, and back to a sick belly today. :( Hope he didn't get the C. Dif infection Kel had.

5. Did I mention waiting and not knowing makes imaginations take on a life all to themselves?

Doesn't suck:

1. Reminiscing with family taking Kel's mind off things for a bit.

2. Watching Butch pick on Kel and Rachel and just enjoying the show.

3. David being good today (just don't ask me about the last 2 days and my patience level).

4. Being one day closer to knowing!

5. Steak and corn - super duper YUM!

I am going to try to make my first ca-pie-kie tomorrow for all, so I will let you know how it turns out. Dad sent directions for his peanut butter pie inside a chocolate lava cake and I can't wait! David also has his first swim lessons this week with his good friend Doyoon - I am excited for that because he loves the water and he loves Doyoon - good combination!

I must sleep before tomorrow, so for now I bit you adeiu.

T

A brief tribute (not about Kel)

It was one year ago today that the gentle giant of a dog, known as Tahoe, was eased from her suffering in this world. Tahoe was the sweetest, most loving 100 lb mutt I have ever known, and even today we call the other dogs by her name - wishful thinking?

We adopted Tahoe from the Buffalo city pound just days after our wedding. She was a mutt - mixed Rott and Mastiff we were told (we would see the lab part later) - and just 10 lbs. She was born in the pound and some of her siblings were still there. We chose her because of all of the pups she was the only one who didn't come to the front of the pen to play with the humans - she wanted to bite and play on the other pups. We thought that would be good for our already one year old beagle, Hudson ... but this was before we knew how intolerant of other dogs he is.

Within days, Tahoe was sick with the parvo virus and we almost lost her then. She was down to 6 lbs, and we had to stay with her all night and hand feed her. She made it, and within a year was almost up to 100 lbs. When we saw the size of her paws, and since we knew we wanted the dogs to sleep in the bed with us, we even went and changed from a queen bed to a king!

Tahoe's life was full of love and play, dreams and belly rubs. She had the sweetest temperment I have ever known - this dog would turn over for a chihuahua (probably thanks to the bullying from Hudson), but by sheer size was a great guard dog.

When she was four she had her first seizures (scared the HECK out of me), and was placed on epilepsy drugs. And at the ripe young age of 9 she was diagnosed with cancer in March of 2010.

It was too soon ... too soon to lose Tahoe ... too soon after losing my mother to hear the word 'cancer' again, and too soon for us all to go through it all again (we had no idea what was on the horizon).

Tahoe was our love, and we wish she were with us, but her suffering is gone.

We love and miss you, gentle giant.

-Mom and Dad

How hopeful became hurtful

When the diagnosis of testicular cancer, even late state, was given, it came with the addendum 'If you had to pick a cancer, you picked the right kind. This is so curable'. And in the beginning of this all that was a beacon of hope - 95% cure rates over all stages.

Of course the actual cure rates varied by stage - 100% for stage 1, less as the disease progressed and a little less for nonseminoma vs seminoma - but hey, he picked the right one ... right?

And that was something to hold onto - hope for the cure. Chances were good - 95%! Even with his late stage, large metastasis and type of nonseminoma all still looked good (and still does, don't get me wrong on this part). Hey - this is what Lance Armstrong had, right?

But somehow, the words ‘That type is so curable’ became hurtful, almost insulting.

Because Kel went through the 4 cycles of chemo – BEP, the new and improved cure! And there was a ~30% chance that he wouldn’t be done after the chemo and might need surgery, but the chance of no long responding and needing more chemo before looking at surgery never came up.

And so now hearing that it is so curable is like a slap in the face, because he is not yet cured. It’s like hearing he did something wrong … because otherwise he should be done and past this already, right?

Come on Kel, it’s so curable … why aren’t you cured yet?

He and I were talking about that the other night, how for some reason that was hurtful to us both. It’s like disregarding his cancer because there is no question – he will be cured.

And his chances are still great, but they are no longer the 95%. Now it is a ‘the expected outcome is a cure’, but no more numbers. And I don’t know if he really wants me to look into chances here. I don’t know if information is knowledge, or ignorance is bliss. Sometimes I wish I was a little more ignorant on this all.

Why couldn’t it be a disease I don’t know well, because then I wouldn’t know too much and worry too much? For me, ignorance would be bliss. But Kel claims he wants to know more, so I will find out that the 3-4% overall mortality increases given his diagnosis, lack of full response, and etc.

On the upside, he is feeling a LOT better now, almost a week post Neulasta and the extreme bone pain. The pain side effect from the first cycle of the new chemo is some fatigue this week, but of course it all should start again next week, so this only kind-of-tired part will be around only for a short time.

The upcoming schedule: Kel has bloodwork on Friday (I just re-scheduled it today so that the biomarker results would be in by the next appointment and the best decision could be made for the second cycle, or not), Butch and Rachel (Kel’s dad and sister) come into town on Saturday and stay through the following weekend, the follow-up appt with the oncologist is Tuesday afternoon and we will learn when/if the second cycle starts then.

We fully expect a marked decrease in the biomarkers since he asked for them to be examined while he was still in the hospital for cycle 1 of this new stuff, and one of the two #’s already decreased, but those #s will really be what makes Kel more confident and feel better (a decrease, of course). So Tuesday 5/31 is the day!

It sux that hope became hurt when Kel didn’t follow the prescribed norm, when his response to chemo fell short of a cure, and when these few months began to drag out to more than half a year. But such is life, and you have to work with what is thrown your way, so I choose to take this curve ball and hit it out the park, make it a home run (does that metaphor even work? I soooo don’t know much about baseball).

I toggle between hurt and hope, between fear and wishing for ignorance. Yesterday’s birthday went so well that, at least for tonight, I am grabbing a hold of hope and ‘hoping’ it sticks through my dreams.

Hopeful dreams for all,

T

It's my birthday and I have cancer

Today was Kel's 37th birthday, and he used that excuse ALL DAY! Well, maybe only once or twice and really just to be funny, but still - how can you respond to that?

By giving him whatever he wants.

We had a nice day - Kel managed to sleep in thanks to some 'Simply Sleep last night, then breakfast out (a Sunday tradition), and we picked up Kel's birthday present which trickled down into new stuff for David and I (he got a new phone, I got his old phone and David is playing with my old broken phone), and came home to relax for a bit (or grade finals ... whichever). Kel wanted a steak dinner, so back out to Texas Roudhouse (where the picture was taken) and then our friends and neighbors came over for cake and some hanging out outside. It was an overall good day.

Kel is feeling a lot better than the last few days. Friday was rough with the excessive bone pain, yesterday he just walked around like he was an 85 year old man, and today he did a lot better. But by the end of the night, he is exhausted. Considering this is only 1.5 weeks post chemo ending, though, not a bad time.

David had fun at karate on Sat morning and Kel and I went to the bakery next door. It was there that I decided to get a cake (should have waited for Dad's ca-pie-ke recipe today, b

ut I can make that for another special day ... like, ummmmm, a Thursday!). They messed up the 'logo' a bit, but it was a delicious cake. (---->)

After the breakfast out, the steak dinner and the cake, though? I might explode overnight. Ugh ... too much food ... need a food coma right now.

Thank you to all who called and who posted on Kel's FB wall. You helped make it a special day where he could forget about the cancer (well, except for our normal cancer humor now), and just have a regular birthday.

I am off to finish painting my nails 'Fuschia Power' before crashing ... Happy 37th birthday to Kel, and goodnight to all!

T

Extreme bone pain

We think we finally figured out what it is from, but OH MY GOSH is Kel in a lot of pain! Wowsa. He received a shot the other day to increase his immune system - something to encourage his white blood cells to grow so that he isn't so susceptible to infections (it is calle Neulasta). He had this shot before and remembers some bone pain, but nothing like the excrutiating, pulsing pain he is in right now.

Writhing, wincing, agonizing pain.

I was just reading some online forums about this and one guy said it well "figures the stuff that's helping my system hurts more than the poison". Ok, so the poison sux too, but this is like adding insult to injury ... in a life-saving way.

Kel didn't work today, too tired and still not feeling well. One week of chemo is equalling 2 weeks off work at this rate. Can I donate my leave time to him? It seems I need to try and use up that and my vacation time soon anyway.

Kel didn't sleep well last night either - couldn't stop his mind from going a mile a minute. Not great, positive stuff either, which is ok. He is very positive often, but it is only natural and expected to let his mind think of the bad what-could-be's sometimes. Then tonight we had a good conversation about it all, and from that Kel said something really funny (and a little morbid, so beware):

He said he needs to make it another year or two because he can't pass on during an NFL lockout year. He needs to see his precious Pats play a little bit more.

I cracked up at that one. Sad, but true. Sometimes you have to take the humor where you can.

David has been really good lately at school, at home, everywhere. So good that he got a new toy today - a Marvel kids car with a little ironman (we have to replace a lot of the action figures that Saja ate!). And tomorrow we will take him to karate for the first time in weeks and let him run around a bit more. It should be fun.

Sunday is Kel's 37th birthday. I am trying to get some cake ideas from Dad to make something special for it. Not sure what else we will do - whatever Kel wants (Mega-Birthday-Cancer-Card), I guess. He is still on his "I don't want to be a burden" to anyone kick, so hopefully he will at least make a request. If you talk to him, please feel free to encourage him to do something special that day. Other than get him a new phone.

Have a few sux for tonight, so going back to the list form:

1. Bone pain so bad Kel called it "run over by a Mack truck" pain. And that is from the good meds.

2. Having cancer side effects on a birthday. Going to overshadow the good that day.

3. Extreme fatigue and malaise that makes Kel unable to function. I worked from home this afternoon just to make sure he was ok because he was that bad.

4. Last one, from Kel, time spent in the hospital - too long being cooped up, feeling down. A few days is like a vacation, but past that was hard. Probably even more once David couldn't come in too.

A Doesn't suck list:

1. From Kel - Claritin! I know it sounds funny, but to help with the bone pain we were looking online just before I started writing on the blog and I saw many posts about Claritin helping. Kel had already taken a few oxycodone to no avail. He added the claritin about 30 min ago and has finally gotten some relief!

2. David. He has been really good lately. I was a little worried about how he would handle not being able to jump on daddy again, but he has been doing great.

3. Cancer humor. Morbid, dark, just plain wrong, but still funny.

Off to sleep for now (another doesn't suck - sleeping).

Love,

T