Tuesday, May 31, 2011

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.

Monday, May 30, 2011

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.


Tuesday, May 24, 2011

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

Monday, May 23, 2011

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,


Sunday, May 22, 2011

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!


Friday, May 20, 2011

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).


Wednesday, May 18, 2011

Exhausted, but glad to be home

Kel is home now, and glad to be here. Yesterday I brought him home and then when back to work. When I came back with David he was out cold for a while.

Exhaustion is an understatement.

He was up long enough to eat dinner and then back out. Woke up this a.m. exhausted too, but he managed to get out of bed and go to work - a training session for hostage negotiators - at least for part of the day. He had to leave early to go to the cancer center to get a shot to increase his white blood cell count and counteract the myelosuppression caused by chemo. He had this with each of the 4 cycles before too (the supression, not the shot), but it took longer. Generally it would be there at the end of the 3 week cycle. VIP therapy seems to be more toxic, since the depressed immune system is already notable at just 1 week. Hopefully the shot will help though.

He needs his immune system as much as possible to help with the C. Dif infection. He is still asymptomatic, but we have both noticed a distended stomach, which is likely to be associated. We will watch it for a little longer before calling the doc. He is already on vancomycin, though, so I am not really sure what more they can/will do. I just hope that he stays asymptomatic.

My semester(s) have ended, so going to have more time coming up soon! Yeah! This was a semester with just a little more stress than I could handle. I only have to finish up grading by Monday and then have a short break before the summer semester begins ... but that is only for one online class at least. I can handle that.

We are planning on working on the backyard this weekend - somewhat of a normal activity, and we have some weeding to do. Kel thinks he will be up for it, but we will see. We will also take David to karate, and maybe in another week I will stay for a Krav class? I could use some hitting ...

Nothing exciting to write, no insight, just life. Going slowly. Painfully slowly, but going.

Tonight's sux ... Kel picks his fatigue. He is more tired after this cycle than after most of the previous 4. Not surprising, of course, but it makes it hard for him to function and to live life through all of this. He has to wake up in the middle of the night for meds too, which just exacerbates the process, but this too shall pass.

I am tired too tonight, so going to sign off. I will work on insight for the next post. :)


Sunday, May 15, 2011

Grease coagulating around the cancer and suffocating it?

That is the theory anyway about how a Garbage Plate from Nick Tahou's in Rochester, NY might help a cancer patient.

For those who have never heard of this concoction - it is a plate 1/2 covered in home fries and 1/2 covered in macaroni salad (cold), then you can add what you want on top. Kel wanted a cheeseburger plate (2 burgers), mustard, no onions and extra hot sauce. The hot sauce is really what makes a Nick's plate special - meat sauce with the greasy drippings from the fryer added. A whopping 2500 calories for this monstrosity.

Since I was in Rochester for the past few days, and Rochester is where Kel and I met, so he knows about these plates, he asked that I bring one back. And not in tupperware for him to eat - he yearned for the experience, so he wanted it in the styrofoam platter.

With the help of a few smart thinkers, we figured out how to accomplish this - I first bought some cheap tupperwares, then went over to Nick's with Kel's sob story and asked them if instead of assembling the plate we could have the parts each put in their own tupperware. The nice man helped, and we had each part separate.

Then back at Tim's place (Kel's best friend, and the best man from our wedding) we froze the tupperwares. I pulled them out in the morning, stuck them in my suitcase double-bagged, and it all made it here ok!

Then I fried up the home fries again (don't want them to get soggy), put them in another container, brought this all to Kel at the hospital after dropping David off at a friend's house, and assembled a Nick's plate for him in the styrofoam container.

He relished it all (see above).

Overall he seems to be doing ok, just tired. He actually has an infection of C. dificile, but he has no symptoms and this was caught on a routine screen. He is on antibiotics for it, and David now can't go visit at the hospital (you have to gown up), but all is ok.

He will have just over one more full day of infusions and I will take him home sometime on Tuesday. From there we will play it by ear on how he does.

See other post for the sux/doesn't suck section because I am struggling to keep my eyes open.


Narrow vision

Warning: This is a vent. I have been stewing for a few days and now that I am stuck on a plane for a few hours going home to see my boys I am stewing more and need/want to get this out. This is not about Kel or cancer, per se, just about how ‘stuck in their world view’ I have recently found a former friend to be.

Background: Before the newest of a series of cancer diagnoses, Kel and I were on Nutrisystem together and doing very well. We had each lost ~20 lbs in 8 or so weeks and were proud. His diet, of course, went out the window because eating 1400 calories a day of veggies and NS meals just doesn’t help the psyche when dealing with cancer. Comfort food does.

I did ok for the next few months. I don’t have the willpower to stay on NS alone, but I managed to lose a little more, provided my father wasn’t in town (see notes about the ridiculous deliciousness of ca-pie-kes.) But I am losing ground, and with the most recent bouts of chemo and knowing there is more therapy, I am reverting to comfort food and chocolate-y chip cookie goodness.

Nothing wrong with that, I know.

Not something to focus on now, I know.

But at the same time, I don’t want to undo the good pre-cancer … I kind of don’t want cancer to win my weight loss battle, ya know?

Cutting to the chase: I have a friend (mostly virtual/online, although we did meet a few years ago with a slew of other women going through similar non-cancer related stuff) who is a fitness buff. She has been through a lot and perseveres and I mainly find her attitude and motivation … well, motivating. So I reached out and asked this person for motivation (man, I need another word here – 3 times in 2 sentences? Oy) not for working out but for help with willpower to not eat cookies and just do better.

Her response? Cookies don’t help with stress (but wine does) – lift a barbell. Ummm, ok, but missing the point.

Now, I do believe that she has no idea what the source of worry and stress is in my life, and that is fine – I don’t expect everyone to follow my every move throughout life. I am not that special or noteworthy … I only expect most people to follow me. Just kidding.

Ok, so I wrote something back publically and then sent a private note explaining that between the teaching and working, David, the new upcoming job, wrapping up the current job and …. oh, yeah, that pesky cancer-crap, that increasing workout time wasn’t in the cards. I get to teach a self-defense seminar now and then, and maybe after the semester is over I can get to the dojo once a month to hit things, but overall, increasing beyond some walks – to quote GW, Sr – wouldn’t be prudent at this juncture. However, I can control eating better. Then I again asked, if she had the time, for some motivation (ok, seriously going to thesaurus another word … how about inspiration or incentive) inspiration to help keep me on my toes.

And I get … nothing. Nothing for days. Not even a baloney, full of platitude, I didn’t know about Kel, I am so sorry. Nada. Actually, I specifically get ignored and see notes about ‘if you aren’t willing to change your life for healthy then I can’t help you’, not specifically about me, really, but still there.

So, I de-friended said person, and stew. And vent. And stew. And with nothing to do on a plane (except write an exam in a minute) I prep a blog about it.

I feel better now, thanks.

Report about Kel: I don’t know, actually. I have been out of town since he started this chemo cycle. I checked in on him each day and got his report and my father’s report, but I really know nothing. He sounded ok yesterday, terrible on Friday, and ok on Saturday. He is sleeping a lot, which is good. He will be infused through late Monday night and should be released to go home on Tuesday. If/when he goes into work this week will depend on the post-chemo days.

The sux for today/the past few days is vented about above, but for more:

Not being in town for Kel’s first cycle with this no chemo was not fun for me. Being in Rochester was nice especially to see family and friends that ARE family, and although I didn’t make it onto the UR campus for a trip down nostalgia lane, the meeting went well (including my talk which went REALLY well). However, I was not a happy camper having to call to hear how home was going.

The next trip I take will be on an off-chemo week, and I will give myself less of a guilt-trip.

Yeah, right, who am I kidding. I will still guilt myself. It’s genetic – I learned it from my mother, and her mother and my father’s mother … although they really sent other’s on guilt trips, not so much themselves. Hmmmm… I will have to work on that.

(It is now many hours later than I wrote this, so I will write a second blog about Kel now)


Friday, May 13, 2011

The trip ...

The guilt trip.

I have (according to those around me) been sending myself on a guilt trip. I hate being away from Kel while he is in the hospital getting chemo. I am a horrible wife. :(

I an in upstate NY for a meeting, and it was a good day at the meeting, but when I spoke to Kel this morning he sounded horrible. He was a little better later in the day, but has been sleeping the rest of the time. It is what is best for him right now, but I fear how he will feel worse for the next few days. My father, thankfully, is in Tucson taking care of David and Kel at the same time. Thank you, Dad.

The meeting, as I mentioned, has gone well. The talk I gave went REALLY well, and I heard that some of the other group were interested in recruiting me? Nice to hear. A little late, but nice anyway.

Then there was a nice dinner and some more drinks and even dancing at the hotel bar with some old friends and new friends. Of course that just adds to my guilt, but for an hour or so it helped me feel better and get a change in thinking and focus for a bit. Thank you.

I have one more day in Rochester and then back home on Sunday. Tomorrow I have brunch with cousin Randi, a party for a 1 year old with Kel's best friend (and my love) Tim, and dinner with Dad's college roommate Steve. I will spend the night at Tim's and go back home the next day.

But back to Kel ... I didn't talk to him much today because he wasn't doing well. He woke up to throwing up and a massive headache. After some meds and he slept more he sounded good. I called later, and he was sleeping.

David has (thankfully) been good at school and good for Dad - lots of Scooby Doo helps too. Thanks to Anna and Michael for lending us the new DVDs!

For tonight I am going to go with old and new friends deciding to get me off my guilt trip doesn't suck. Who knew scientists could be so much fun? A few minutes of a live band and dancing took my mind of everything, even for just a moment. Thank you for that.

It is midnight here in NY, so I need to get some sleep for a fun day tomorrow. Have a good night.


Monday, May 9, 2011

Central port or bust ...

Today was a bust. Kel was supposed to have his central port put in today to get ready for chemo on Wednesday with a few days of healing in between.

Small problem - they forgot to tell him to stop his blood thinner last week, so no port because the risk of bleeding was too high.

We thought and wondered about the drugs, but the message that was left on your machine specifically said 'if you are on blood thinners, stop taking them the night before". So Kel didn't take them last night, and upon check-in and getting changed for surgery mentioned this to the doc.

Uh oh, that is a problem. No clotting, no procedure. No go.

So, now we wait and try again on Wednesday still trying to start chemo that day. If not ... well, who knows. It will start later, Kel will be frustrated, it will throw off the schedule for those scheduled to come and visit (well, their dates can stay the same, but chemo won't be exactly those times), and this whole thing will just suck even more.

Sorry, I am quite melancholy tonight. Tired from making exams (still working on that), from the semester, from cancer, from nothing quite working like it should. Just ignore me ... this too shall pass.

I am down to handling things day by day. Maybe hour by hour is a better way to describe it. I can't even fathom how tough this is on Kel, although overall he may be handling it better than me most of the time. He just needs something to move forward. We just need progress towards the cure. UGH, I really am a downer tonight!

On the upside, David was good at school, Saja didn't destroy anything (knock on wood), and it was my last night of teaching in A&P (only exams left).

I leave in a few days for a meeting in Rochester, NY - which is where Kel and I met - and will see some friends and family. Unfortunately those are the same days that Kel will be in the hospital for chemo and I don't really want to go, but he is pushing me and my father will come and stay with David and watch Kel in the meantime. It is great to have the help and support of my father, although I hate putting him through taking care of yet another person so soon after my mother.

I am really whiny, aren't I? Sorry.

I will go to the sux section and hold the whining until another day:

Today sux. Lack of communication and instructions sux. Delaying treatment for a stupid error sux. Working until midnight sux a LOT, when the rest of the house has been asleep since 9pm (Kel included), but this too shall pass.

Just hanging on for now, riding the wave of suck until it passes and waiting until I can take a Krav class and punch something, anything, to get some frustration out.

Needing a hug,

Thursday, May 5, 2011

Not a bad day ...

Going to start with an all about me part tonight ... I was honored at work today when I was given an 'Award of Excellence' for the University of Arizona's College of Pharmacy Research support. I knew I was nominated from a few weeks ago, but had no idea who had done it. At the awards ceremony I got to hear part of the letter written about me, and was given the letter to read later - a special thank you to my nominee Megan Carver for her wonderful words and kindness. From the bottom of my heart - thank you. You made this week a little better!

If only I could have also won a raffle prize ... a massage would have been awesome.

On the downside, my throat hurts and I am getting stuffed up. I am hoping, hoping, hoping that it is just allergies, but it feels like I am coming down with something. :( Thankfully for now Kel still has an immune system, so I guess this is not a bad time to get a cold, but UGH! And I have to travel next week to a meeting for work? I hope this is gone by then.

Back to the upside - that meeting is in Rochester, NY, where I went to undergrad and where Kel and I met. I haven't been there in years (ummm, 10-ish maybe?) and am looking forward to seeing it again, especially in non-winter time. Most of my time will be at the meeting, but I will have an extra day to see the town, see family and friends, and figure out how to get a garbage plate from Nick Tahou's back for Kel.

Artery-clogging yum.

Kel starts chemo again next week ... the day before I leave actually. I wanted to cancel the trip, but Kel doesn't want to burden me by changing my schedule. Ummm, ignoring the problems with that theory ... but he would feel better with as normal as a schedule as possible, so I am going. To help while I am gone, my father will come into town and take care of David. This will be the first time without Kel or I at home, so I hope he will be ok, and I am so so so grateful for your help, Dad.

In between the first and second cycle of the new chemo, Kel will have some bloodwork done. I saw his oncologist today (just walking through the halls at the University hospital) and he assured me that he fully expects a great response with just the first round. Assuming that to be so, the next 2 cycles will continue before re-evaluation and likely surgery. Kel's sister and father will be here for his 2nd cycle and we are so glad they are coming. It will mean a lot to Kel ... and to me ... and to David.

It is almost midnight and I took some NyQuil to help with the cold, so before I pass out a-la-Dennis Leary's 'Big N, little y, Big F'in Q'-style, onto the sux/doesn't suck portion:

Being honored at work definitely doesn't suck, especially when you get to read the wonderful nomination letter written.

But that is a little too much about me ... so for Kel, 2 sonoran hot dogs for his lunch from two great brothers-in-blue doesn't suck. It may not be good for the waistline (I wouldn't know on these, never had one), but he loves them and is BIG on comfort food lately. :) So THANK YOU for the wonderful support!

Passing out now,

Tuesday, May 3, 2011

Cancer landed a left uppercut today ...

Kel had a follow up appointment with the oncologist this morning to get the results of his bloodwork and find out the next plan. Cancer won today's fight, but is GOING TO LOSE THIS WAR! So, the results and plan:

Not surprisingly, but definitely disappointingly, the biomarkers are increasing meaning the cancer left is still active and growing. They aren't sky-high, but definitely trending the wrong way. So, we need to kick the testicular cancer ... well, in the testicles! :) Trying for humor, just not doing well at it today.

The plan:
Kel needs to do three more rounds of chemo, and to start as soon as he can. We are waiting to hear from some scheduling, but he will have a central line put in - which will be nice to his veins for a bit - before starting chemo next week. This regimen is a bit more harsh and is constantly infused, so for each of the 3 chemo cycles he will stay in the hospital for 5 days. The first round should be next week, the second at the end of May, and the third in late June. After that it will be a re-eval with bloodwork and a CT scan to decide if he still needs surgery - doc put that as a 50/50 shot.

After the first round of chemo, Kel will have some bloodwork again. If the biomarkers decrease as expected, than the next 2 cycles will continue as planned. If he does not respond to the new stuff - called VIP, btw, for vinblastine, ifosfemide and cisplatin - then the next option is something called tandem transplant where he donates his own bone marrow to himself, gets high dose chemo ... high, high dose ... and then gets his own bone marrow back. Then likely surgery to follow. Pray NOT for that - it is not pleasant for Kel to go through.

Right now he, and we, are tired, scared, and hating cancer. Cure rates are still great for his prognosis, but are down a little. That is weighing heavily on him and us all.

The sitting here waiting for calls, for chemo, for cancer kill is agonizing. Hurry up and wait is NOT the approach to take with cancer. Kel wants to do something .... anything ... to get things moving along. Even waiting until next week is hard.

I hate cancer. My head is killing me today from too many tears. Too much stress. Too much.

It has been a tough day, so gonna go with Cancer Sux. Cancer REALLY sux. Cancer really really (insert explicative) sux.

I need my mommy ... oh crap - cancer really sux.

Through more damn tears that are making my head agonizing ... so signing off.